Americans with Disabilities Act (ADA) Technical Assistance Program The Department of Justice ADA Technical Assistance Program provides free information and technical assistance directly to businesses, nonprofit service providers, state and local governments, people with disabilities, and the general public. Technical assistance services provide the most up-to-date information about the ADA and how to comply with its requirements.

ASA Information for Law Enforcement The Department of Justice's ADA website includes compliance assistance materials to help state and local law enforcement officers understand how to interact with victims, witnesses, suspects, and others who have disabilities. The website provides publications and a link to the "Police Response to People with Disabilities" video.

Homes for Our Troops Homes for Our Troops is a national nonprofit, non-partisan, tax-exempt organization committed to helping those who have selflessly given to the country and have returned home with serious disabilities and injuries since September 11, 2001. Homes for Our Troops raises donations of money, building materials, and professional labor to coordinate the process of building an accessible home for severely injured service members and their families.

Project Civic Access The Department of Justice's Project Civic Access is a wide-ranging effort to ensure that counties, cities, towns, and villages comply with the ADA by eliminating physical and communication barriers that prevent people with disabilities from participating fully in community life. The Department of Justice has conducted reviews in all fifty states, as well as Puerto Rico and the District of Columbia, and posts the agreements to help additional communities come into compliance with the act.

United States Access Board (USAB) The USAB is an independent federal agency devoted to accessibility for people with disabilities. The USAB develops and maintains design criteria for the built environment, transit vehicles, telecommunications equipment, and for electronic and information technology; provides technical assistance and training on these requirements and on accessible design; and continues to enforce accessibility standards that cover federally funded facilities.

Americans with Disabilities Act (ADA) Technical Assistance Program The Department of Justice ADA Technical Assistance Program provides free information and technical assistance directly to businesses, nonprofit service providers, state and local governments, people with disabilities, and the general public. Technical assistance services provide the most up-to-date information about the ADA and how to comply with its requirements.

ASA Information for Law Enforcement The Department of Justice's ADA website includes compliance assistance materials to help state and local law enforcement officers understand how to interact with victims, witnesses, suspects, and others who have disabilities. The website provides publications and a link to the "Police Response to People with Disabilities" video.

Homes for Our Troops Homes for Our Troops is a national nonprofit, non-partisan, tax-exempt organization committed to helping those who have selflessly given to the country and have returned home with serious disabilities and injuries since September 11, 2001. Homes for Our Troops raises donations of money, building materials, and professional labor to coordinate the process of building an accessible home for severely injured service members and their families.

Project Civic Access The Department of Justice's Project Civic Access is a wide-ranging effort to ensure that counties, cities, towns, and villages comply with the ADA by eliminating physical and communication barriers that prevent people with disabilities from participating fully in community life. The Department of Justice has conducted reviews in all fifty states, as well as Puerto Rico and the District of Columbia, and posts the agreements to help additional communities come into compliance with the act.

United States Access Board (USAB) The USAB is an independent federal agency devoted to accessibility for people with disabilities. The USAB develops and maintains design criteria for the built environment, transit vehicles, telecommunications equipment, and for electronic and information technology; provides technical assistance and training on these requirements and on accessible design; and continues to enforce accessibility standards that cover federally funded facilities.

Assistance Dogs of America, Inc. (ADAI) ADAI helps children and adults with disabilities achieve greater independence by training and placing service and therapy dogs to assist with the individual's daily needs. The ADAI website provides information about the application process, the organization, and upcoming ADAI events.

Canine Companions for Independence (CCI) CCI is a nonprofit organization that enhances the lives of people with disabilities by providing highly-trained assistance dogs and ongoing support to ensure quality partnerships. Among other programs, the CCI also provides dogs to veterans with disabilities resulting from military service through their Wounded Veteran Initiative.

Commonly Asked Questions about Service Animals in Places of Business Complied by the Disability Rights Section, Civil Rights Division, US Department of Justice, this website provides answers to frequently asked questions from business operators regarding service animals and the law.

Dogs for the Deaf Dogs for the Deaf rescues and professionally trains dogs to assist people and enhance their lives, maintaining a lifelong commitment to all dogs they rescue and all teams they serve. The Dogs for the Deaf website provides information on the organization, a descriptions of the individual programs, and answers to frequently asked questions.

Patriot Service Dogs, Inc. Patriot Service Dogs, Inc is a nonprofit, tax-exempt organization dedicated to helping Florida's disabled community gain a sense of independence through their partnership with a well-trained service dog. The focus of the organization is placing service dogs with returning veterans in need.

Service Dog Law Changes - Effective March 15, 2011 the U.S. Department of Justice made important changes in the Americans with Disabilities Act regarding what defines an animal as a service dog, and more.

Assistance Dogs of America, Inc. (ADAI) ADAI helps children and adults with disabilities achieve greater independence by training and placing service and therapy dogs to assist with the individual's daily needs. The ADAI website provides information about the application process, the organization, and upcoming ADAI events.

Canine Companions for Independence (CCI) CCI is a nonprofit organization that enhances the lives of people with disabilities by providing highly-trained assistance dogs and ongoing support to ensure quality partnerships. Among other programs, the CCI also provides dogs to veterans with disabilities resulting from military service through their Wounded Veteran Initiative.

Commonly Asked Questions about Service Animals in Places of Business Complied by the Disability Rights Section, Civil Rights Division, US Department of Justice, this website provides answers to frequently asked questions from business operators regarding service animals and the law.

Dogs for the Deaf Dogs for the Deaf rescues and professionally trains dogs to assist people and enhance their lives, maintaining a lifelong commitment to all dogs they rescue and all teams they serve. The Dogs for the Deaf website provides information on the organization, a descriptions of the individual programs, and answers to frequently asked questions.

Patriot Service Dogs, Inc. Patriot Service Dogs, Inc is a nonprofit, tax-exempt organization dedicated to helping Florida's disabled community gain a sense of independence through their partnership with a well-trained service dog. The focus of the organization is placing service dogs with returning veterans in need.

Service Dog Law Changes - Effective March 15, 2011 the U.S. Department of Justice made important changes in the Americans with Disabilities Act regarding what defines an animal as a service dog, and more.

AbleData AbleData provides objective information on assistive technology and rehabilitation equipment available from domestic and international sources to consumers, organizations, professionals, and caregivers within the United States. The AbleData website provides information on how individuals can contact manufacturers or distributors of these disability-related products and a database of assistive technology, which contains objective information on almost 40,000 assistive products. 

Alliance for Technology Access (ATA) ATA is a national and international network of technology resource centers, community-based organizations, agencies, individuals, and companies that supports access to and innovation in technology tools for people with disabilities. The ATA website contains links to the online community, information about membership in ATA, a resource hub, and a list of upcoming events. 

Apple Accessibility Apple includes assistive technology in its products as standard features. The Apple Accessibility website provides additional information about the many accessibility features built into Apple products and information on how Apple technology is being used to address the needs of students. 

Assistive Technology for Students with Mild Disabilities Provided by KidSource Online, this website provides an overview of assistive technology devices and descriptions of how assistive technology can be applied in instruction. 

Closing the Gap, Inc. Closing The Gap, Inc. is an organization that focuses on assistive technology for people with special needs through its bimonthly magazine, annual international conference, and website. 

Disabilities, Opportunities, Internetworking, and Technology (DO-IT) Operated by the University of Washington, DO-IT serves to increase the success of individuals with disabilities in challenging academic programs and careers by promoting the use of computer and networking technologies to increase independence, productivity and participation in education and employment. 

Equal Access to Software and Information (EASI) EASI is a provider of online training on accessible information technology for persons with disabilities. The EASI website contains information on upcoming webinars and courses, as well as podcasts, and the Information Technology and Disabilities (ITD) e-journal. 

National Center for Accessible Media (NCAM) The NCAM is a research and development facility dedicated to addressing barriers to media and emerging technologies for people with disabilities in their homes, schools, workplaces and communities. 

Providing Education by Brining Learning Environments to Students (PEBBLES) Project The PEBBLES Project is a national program that uses robots to give students who are confined to hospitals a physical presence in their schools. 

Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) RESNA is a professional society for individuals and organizations interested in technology and disability that contributes to the public welfare through scientific, literary, professional and educational activities supporting the development, dissemination and utilization of knowledge and practice pertaining to rehabilitation and assistive technology. The RESNA website provides information on certification, professional development, resources, membership, and assistive technology standards. 

Trace Center The Trace Center is composed of a group of engineers, researchers, clinicians and other professionals at the University of Wisconsin, Madison, who work with issues centering around technology and disability. The Trace Center website provides information on current projects and programs, resources, tools and a list of publications. 

TRICARE Computer/Electronic Accommodations Program (CAP) TRICARE CAP provides assistive technology and services to people with disabilities, federal managers, supervisors and information technology professionals. CAP increases access to information and works to remove barriers to employment opportunities by eliminating the costs of assistive technology and accommodation solutions.

AbleData AbleData provides objective information on assistive technology and rehabilitation equipment available from domestic and international sources to consumers, organizations, professionals, and caregivers within the United States. The AbleData website provides information on how individuals can contact manufacturers or distributors of these disability-related products and a database of assistive technology, which contains objective information on almost 40,000 assistive products. 

Alliance for Technology Access (ATA) ATA is a national and international network of technology resource centers, community-based organizations, agencies, individuals, and companies that supports access to and innovation in technology tools for people with disabilities. The ATA website contains links to the online community, information about membership in ATA, a resource hub, and a list of upcoming events. 

Apple Accessibility Apple includes assistive technology in its products as standard features. The Apple Accessibility website provides additional information about the many accessibility features built into Apple products and information on how Apple technology is being used to address the needs of students. 

Assistive Technology for Students with Mild Disabilities Provided by KidSource Online, this website provides an overview of assistive technology devices and descriptions of how assistive technology can be applied in instruction. 

Closing the Gap, Inc. Closing The Gap, Inc. is an organization that focuses on assistive technology for people with special needs through its bimonthly magazine, annual international conference, and website. 

Disabilities, Opportunities, Internetworking, and Technology (DO-IT) Operated by the University of Washington, DO-IT serves to increase the success of individuals with disabilities in challenging academic programs and careers by promoting the use of computer and networking technologies to increase independence, productivity and participation in education and employment. 

Equal Access to Software and Information (EASI) EASI is a provider of online training on accessible information technology for persons with disabilities. The EASI website contains information on upcoming webinars and courses, as well as podcasts, and the Information Technology and Disabilities (ITD) e-journal. 

National Center for Accessible Media (NCAM) The NCAM is a research and development facility dedicated to addressing barriers to media and emerging technologies for people with disabilities in their homes, schools, workplaces and communities. 

Providing Education by Brining Learning Environments to Students (PEBBLES) Project The PEBBLES Project is a national program that uses robots to give students who are confined to hospitals a physical presence in their schools. 

Rehabilitation Engineering and Assistive Technology Society of North America (RESNA) RESNA is a professional society for individuals and organizations interested in technology and disability that contributes to the public welfare through scientific, literary, professional and educational activities supporting the development, dissemination and utilization of knowledge and practice pertaining to rehabilitation and assistive technology. The RESNA website provides information on certification, professional development, resources, membership, and assistive technology standards. 

Trace Center The Trace Center is composed of a group of engineers, researchers, clinicians and other professionals at the University of Wisconsin, Madison, who work with issues centering around technology and disability. The Trace Center website provides information on current projects and programs, resources, tools and a list of publications. 

TRICARE Computer/Electronic Accommodations Program (CAP) TRICARE CAP provides assistive technology and services to people with disabilities, federal managers, supervisors and information technology professionals. CAP increases access to information and works to remove barriers to employment opportunities by eliminating the costs of assistive technology and accommodation solutions.

National Family Caregivers Association (NFCA) The NFCA educates, supports, empowers and advocates for the more than sixty-five million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. The NFCA website provides caregiver resources, links to their volunteer network, and a network to connect caregivers. 

National Family Caregiver Support Program (NFCSP) The NFCSP provides grants to states and territories to fund a range of support programs that assist family and informal caregivers to care for their loved ones at home. The NFCSP offers a range of services to support family caregivers including, but not limited to information to caregivers about available services; assistance to caregivers in gaining access to the services; individual counseling, organization of support groups, and caregiver training; respite care;  and supplemental services, on a limited basis.

National Family Caregivers Association (NFCA) The NFCA educates, supports, empowers and advocates for the more than sixty-five million Americans who care for loved ones with a chronic illness or disability or the frailties of old age. The NFCA website provides caregiver resources, links to their volunteer network, and a network to connect caregivers. 

National Family Caregiver Support Program (NFCSP) The NFCSP provides grants to states and territories to fund a range of support programs that assist family and informal caregivers to care for their loved ones at home. The NFCSP offers a range of services to support family caregivers including, but not limited to information to caregivers about available services; assistance to caregivers in gaining access to the services; individual counseling, organization of support groups, and caregiver training; respite care;  and supplemental services, on a limited basis.

AboutSmiles AboutSmiles simplifies access to and widens the distribution of oral health knowledge and supports health professionals through continuing education programs, publications and other services with the intent to enhance their practice and the quality of service for their patients. 

American Academy of Pediatrics (AAP) AAP is an organization of pediatricians committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults. The AAP website contains general information related to child health, information regarding the AAP’s programs and activities, AAP policies and guidelines, AAP publications, and other child health resources. 

March of Dimes Birth Defects and Genetic Conditions March of Dimes is the leading nonprofit organization for pregnancy and baby health.  March of Dimes Birth Defects and Genetic Conditions website provides information on a variety of birth defects and genetic conditions, as well as comprehensive coverage on topics ranging from pregnancy through caring for a newborn. 

Medweb Medweb is a technology leader in the delivery of web-enabled, secure telemedicine, teleradiology, Radiology Information System, and Picture Archiving and Communications System solutions. The Medweb website provides information on disabilities-guides, sites, databases, documents, electronic newsletters, and journals. 

National Association of Children's Hospitals and Related Information (NACHRI) NACHRI is a nonprofit organization of children's hospitals, large pediatric units of medical centers, and related health systems, including those that specialize in rehabilitative care of children with serious chronic or congenital illnesses. The NACHRI website provides information on quality and patient safety, health promotion, current research, public policy, upcoming conferences and educational opportunities, and a hospital directory. 

National Center for Medical Home Implementation The National Center for Medical Home Implementation is a cooperative agreement between the Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP) that works in conjunction with federal agencies and other partners and stakeholders to ensure that all children and youth, including children with special needs, have access to a medical home. 

National Institute of Dental and Craniofacial Research (NIDCR) Special Needs The NIDCR Special Needs website provides publications related to practicing oral care for people with developmental disabilities, publications on oral conditions in children with special needs, continuing education opportunities, and additional resources. 

National Organization for Rare Disorders (NORD) The NORD, a nonprofit, tax-exempt organization, is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases (diseases that have not been "adopted" by the pharmaceutical industry) and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. The NORD website allows users to search a database of understandable information on over 1,100 rare disorders and connect with more than 2,000 support groups, voluntary health organizations, and nonprofit agencies. 

Pathways Awareness Pathways Awareness is dedicated to increasing knowledge about the gift of early detection and the benefit of early therapy for infants and children with early delays. Pathways Awareness provides knowledge, information and a sense of community to parents as they guide their children on life's journey. The Pathways Awareness website provides information and research targeted at new parents, concerned parents, and professionals.

AboutSmiles AboutSmiles simplifies access to and widens the distribution of oral health knowledge and supports health professionals through continuing education programs, publications and other services with the intent to enhance their practice and the quality of service for their patients. 

American Academy of Pediatrics (AAP) AAP is an organization of pediatricians committed to the attainment of optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults. The AAP website contains general information related to child health, information regarding the AAP’s programs and activities, AAP policies and guidelines, AAP publications, and other child health resources. 

March of Dimes Birth Defects and Genetic Conditions March of Dimes is the leading nonprofit organization for pregnancy and baby health.  March of Dimes Birth Defects and Genetic Conditions website provides information on a variety of birth defects and genetic conditions, as well as comprehensive coverage on topics ranging from pregnancy through caring for a newborn. 

Medweb Medweb is a technology leader in the delivery of web-enabled, secure telemedicine, teleradiology, Radiology Information System, and Picture Archiving and Communications System solutions. The Medweb website provides information on disabilities-guides, sites, databases, documents, electronic newsletters, and journals. 

National Association of Children's Hospitals and Related Information (NACHRI) NACHRI is a nonprofit organization of children's hospitals, large pediatric units of medical centers, and related health systems, including those that specialize in rehabilitative care of children with serious chronic or congenital illnesses. The NACHRI website provides information on quality and patient safety, health promotion, current research, public policy, upcoming conferences and educational opportunities, and a hospital directory. 

National Center for Medical Home Implementation The National Center for Medical Home Implementation is a cooperative agreement between the Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP) that works in conjunction with federal agencies and other partners and stakeholders to ensure that all children and youth, including children with special needs, have access to a medical home. 

National Institute of Dental and Craniofacial Research (NIDCR) Special Needs The NIDCR Special Needs website provides publications related to practicing oral care for people with developmental disabilities, publications on oral conditions in children with special needs, continuing education opportunities, and additional resources. 

National Organization for Rare Disorders (NORD) The NORD, a nonprofit, tax-exempt organization, is a federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases (diseases that have not been "adopted" by the pharmaceutical industry) and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. The NORD website allows users to search a database of understandable information on over 1,100 rare disorders and connect with more than 2,000 support groups, voluntary health organizations, and nonprofit agencies. 

Pathways Awareness Pathways Awareness is dedicated to increasing knowledge about the gift of early detection and the benefit of early therapy for infants and children with early delays. Pathways Awareness provides knowledge, information and a sense of community to parents as they guide their children on life's journey. The Pathways Awareness website provides information and research targeted at new parents, concerned parents, and professionals.

Acid Maltase 

The Acid Maltase Deficiency Association (AMDA) The AMDA was formed to assist in funding research for and to promote public awareness of acid maltase deficiency, also known as Pompe's disease. 

Making Headway Foundation, Inc. Making Headway is a support program for families of children with brain and spinal cord tumors and other catastrophic neurological illnesses. The programs and support services cover care before surgery, during the hospital stay, and after the child returns home. 

Acidemia Organic

Organic Acidemia Association (AOA) The OAA is a voluntary, nonprofit, self-help organization dedicated to providing information and support to families of children with inborn errors of metabolism. The OAA provides information to affected families and health care professionals across the country and internationally. 

Acoustic Neuroma 

Acoustic Neuroma Association (ANA) The ANBA provides information and support to patients who have been diagnosed with or experienced an acoustic neuroma or other benign problem affecting the cranial nerves. 

Adrenal Disorders 

National Adrenal Diseases Foundation (NADF) The NADF is a nonprofit organization dedicated to providing support, information and education to individuals with Addison's disease as well as other diseases of the adrenal glands. 

Agenesis of the Corpus Callosum 

National Organization of Disorders of the Corpus Callosum (NODCC) NODCC's mission is to enhance the quality of life of individuals with agenesis of the corpus callosum and other disorders of the corpus callosum by gathering and disseminating information regarding these conditions. 

Aicardi Syndrome 

Aicardi Syndrome The Aicardi syndrome website provides information and comfort to families and friends of girls diagnosed with Aicardi syndrome. 

Albinism Hypopigmentation 

National Organization for Albinism and Hypopigmentation (NOAH) NOAH is a US-based nonprofit, tax-exempt organization that offers information and support to people with albinism, their families, and the professionals who work with them. 

Alopecia Areata 

National Alopecia Areata Foundation (NAAF) The NAAF supports research to find a cure or acceptable treatment for alopecia areata, supports those with the disease, and educates the public about alopecia areata. 

Alpha-1-Antitrypsin (AAT) Deficiency 

Alpha-1 Association The Alpha-1 Association is a member-based nonprofit organization dedicated to identifying those affected by alpha-1 antitrypsin deficiency (Alpha-1); improving the quality of their lives through support, education, and advocacy; and encouraging participation in research.  

Alström Syndrome 

Alström Syndrome International (ASI) ASI is a nonprofit, tax-exempt charity that provides support, information, and coordination worldwide to families and professionals in order to treat and cure Alström syndrome. The ASI website contains information on the organization and information targeted specifically for families and service providers. 

Anophthalmia 

International Children's Anophthalmia Network (ican) ican is a parent support group for families with a child with anophthalmia or microphthalmia. The ican website provides a bulletin board for the latest information about the organization, issues of the organization’s family newsletter, a brochure for the organization, and contact information for the organization. 

Angelman Syndrome 

Angelman Syndrome Foundation (ASF) The ASF strives to advance the awareness and treatment of Angelman syndrome through education and information, research and support for individuals with Angelman syndrome, their families, and other concerned parties. The ASF website provides information on research, resources for families, a listing of upcoming educational events, and information targeted specifically to health care professionals. 

Anorectal Malformations 

Pull-thru Network (PTN) The PTN was organized as a chapter of the United Ostomy Association by a group of families whose children were born with an anorectal malformation. The PTN is dedicated to the support and information needs of the families of children born with imperforate anus, cloaca, cloaca exstrophy, bladder exstrophy, VATER syndrome, Hirschsprung’s disease, and other related birth anomalies. The PTN website contains information and resources on medical topics, educational resources, support resources, and advocacy resources. 

Anorexia Nervosa 

National Eating Disorder Association (NEDA) The NEDA is a nonprofit organization in the United States working to prevent eating disorders and provide treatment referrals to those suffering from anorexia, bulimia and binge eating disorder and those concerned with body image and weight issues. The NEDA website provides information on the organization, descriptions of programs and events, information and resources, descriptions of research efforts, and a method for individuals to become involved. 

Aphasia 

National Aphasia Association (NAA) NAA is a nonprofit organization that promotes public education, research, rehabilitation and support services to assist people with aphasia and their families. 

Aplastic Anemia 

Aplastic Anemia and Myelodysplastic Syndromes (MDS) International Foundation, Inc. (AA&MDSIF) The AA&MDSIF is the largest patient advocate and support organization for bone marrow diseases, providing life-saving hope, knowledge, and support to hundreds of thousands of patients and their families. 

Apraxia

 Cherab Foundation The Cherab Foundation is a worldwide nonprofit organization working to improve the communication skills and education of all children with speech and language delays and disorders with an emphasis on verbal and oral apraxia, severe neurologically-based speech and language disorders that hinder children's ability to speak. 

The Childhood Apraxia of Speech Association of North America (CASANA) CASANA is a nonprofit, tax-exempt, publicly-funded charity whose mission is to strengthen the support systems in the lives of children with apraxia so that each child is afforded their best opportunity to develop speech. 

Arnold Chiari Malformation 

National Institute of Neurological Disorders and Stroke (NINDS) NINDS reduces the burden of neurological disease by conducting, fostering, coordinating, guiding and supporting research on the causes, prevention, diagnosis and treatment of neurological disorders and stroke. 

Arthritis

Arthritis Foundation The Arthritis Foundation is a national nonprofit organization that helps people take control of arthritis by providing public health education; pursuing public policy and legislation; and conducting evidence-based programs to improve the quality of life for those living with arthritis. 

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) As part of the National Institutes of Health, NIAMS supports research into the causes, treatment and prevention of arthritis and musculoskeletal and skin diseases, trains basic and clinical scientists to carry out this research, and disseminates information on research progress in these diseases. 

Asthma & Allergy 

Allergy & Asthma Network Mothers of Asthmatics (AANMA) AANMA is a national nonprofit family health organization dedicated to eliminating suffering and death due to asthma, allergies, and other related conditions. The AANMA website provides information on the organization, a listing of publications, answers to frequently asked questions, information related to advocacy, recent press releases, and information for membership in the organization. 

Asthma and Allergy Foundation of America (AAFA) The AAFA is a nonprofit organization that is dedicated to improving the quality of life for people with asthma and allergic diseases through education, advocacy, and research. 

Ataxia 

National Ataxia Foundation The National Ataxia Foundation is a nonprofit organization dedicated to improving the lives of persons affected by ataxia through support, education, and research. 

Ataxia-telangiectasia 

Ataxia Telangiectasia Children’s Project (A-T Children's Project) The A-T Children's Project is was formed to raise funds through events and contributions from corporations, foundations, and friends. These funds are then used to accelerate first-rate, international scientific research aimed at finding a cure and improving the lives of all children with ataxia-telangiectasia. 

Attention Deficit Disorder (ADD) 

Attention Deficit Disorder Association (ADDA) The ADDA is an adult Attention Deficit/ Hyperactivity Disorder (AD/HD) organization that provides information, resources and networking opportunities to help adults with AD/HD lead better lives. 

Children & Adults with ADD (CHADD) CHADD is a nonprofit organization serving individuals with AD/HD and their families by offering support for individuals, parents, teachers, professionals and others. The CHADD website provides information on AD/HD, resources for finding support, a listing of upcoming conferences and training sessions, and information for membership in the organization. 

Autism 

Autism National Committee (AUTCOM) AUTCOM is an advocacy organization dedicated protecting and advocating the human rights and civil rights of preserving of all persons with autism, pervasive developmental disorder, and related differences of communication and behavior. The AUTCOM website contains the most recent issue of the AUTCOM newsletter; updates on politics and judicial decisions; commentary by people with autism; information about developmental and relationship-based approaches to early intervention and education; coverage of issues affecting community living, home ownership, and consumer choice; and advocacy for access to augmentative, assistive and facilitated communication. 

Autism Society of America The Autism Society of America promotes lifelong access and opportunity for all individuals within the autism spectrum so that they can be fully participating, included members of the community. The Autism Society of America website provides information on the organization, information about living with autism, descriptions of research and programs, and a link to an autism community. 

Autism Services North Autism Services North is a TRICARE-approved Applied Behavior Analysis (ABA) provider serving military families in TRICARE's North, West, and South regions. The Autism Services North website provides information on the organization, answers to frequently asked questions, a listing of providers, and a section dedicated to military families. 

Cleveland Clinic Children's Hospital Center for Autism Located in Cleveland, Ohio, the Center for Autism offers programs including, but not limited to, behavioral health services, diagnostic services, and workshops. The Cleveland Clinic Children’s Hospital Center for Autism website provides information on the programs and services offered, information on therapy and rehabilitation, and a map of center locations. 

Kennedy Krieger Institute, Center for Autism and Related Disorders Kennedy Krieger's clinical programs offer an interdisciplinary approach in treatment tailored to the individual needs of each child. Services include over forty outpatient clinics; neurobehavioral, pediatric feeding disorders, and rehabilitation inpatient units; plus several home and community programs providing services to assist families. 

Operation Autism; A Resource Guide for Military Families Sponsored and maintained by the Organization for Autism Research (OAR), Operation Autism directly supports United States military families touched by autism and autism spectrum disorders. It serves as an introduction to autism, a guide for the life journey with autism, and a ready reference for available resources, services, and support. 

Treatment and Education of Autistic and Communication Related Handicapped Children (TEACCH) Operated by the University of North Carolina School of Medicine, TEACCH is an evidence-based service, training and research program for individuals of all ages and skill levels with autism spectrum disorders. The TEACCH website provides information about autism; regional centers' programs and services; educational approaches; research; and links to TEACCH training in the state of North Carolina. 

The Dan Marino Foundation The Dan Marino Foundation strives to "open doors" towards independence for children with special needs, teenagers transitioning from foster care, and young adults with disabilities. The foundation supports comprehensive, integrated treatment programs, provides outreach services, advances scientific research, and builds independence through employment and daily living transition programs. 

The Doug Flutie Jr. Foundation for Autism, Inc. The Doug Flutie Jr. Foundation for Autism promotes awareness and supports families affected by autism spectrum disorders. The foundation aids financially disadvantaged families who need assistance in caring for their children with autism; funds education and research into the causes and consequences of childhood autism; and serves as a clearinghouse and communications center for new programs and services developed for individuals with autism. 

The Autism Program at Yale The Autism Program at Yale is an interdisciplinary group of clinicians and scholars dedicated to providing comprehensive clinical services to children with autism spectrum disorders and their families. The Yale Developmental Disabilities Clinic offers comprehensive, multidisciplinary evaluations for children with social disabilities, usually focusing on the issues of diagnosis and intervention. 

Autoimmune Disorders 

American Autoimmune Related Diseases Association (AARDA) The AARDA is a national, nonprofit health agency that fosters and facilitates collaboration in the areas of education, public awareness, and research and patient services in an effective, ethical, and efficient manner. The AARDA website provides information about the organization, a newsletter, information about autoimmune diseases, upcoming events, and a section related to advocacy.

Acid Maltase 

The Acid Maltase Deficiency Association (AMDA) The AMDA was formed to assist in funding research for and to promote public awareness of acid maltase deficiency, also known as Pompe's disease. 

Making Headway Foundation, Inc. Making Headway is a support program for families of children with brain and spinal cord tumors and other catastrophic neurological illnesses. The programs and support services cover care before surgery, during the hospital stay, and after the child returns home. 

Acidemia Organic

Organic Acidemia Association (AOA) The OAA is a voluntary, nonprofit, self-help organization dedicated to providing information and support to families of children with inborn errors of metabolism. The OAA provides information to affected families and health care professionals across the country and internationally. 

Acoustic Neuroma 

Acoustic Neuroma Association (ANA) The ANBA provides information and support to patients who have been diagnosed with or experienced an acoustic neuroma or other benign problem affecting the cranial nerves. 

Adrenal Disorders 

National Adrenal Diseases Foundation (NADF) The NADF is a nonprofit organization dedicated to providing support, information and education to individuals with Addison's disease as well as other diseases of the adrenal glands. 

Agenesis of the Corpus Callosum 

National Organization of Disorders of the Corpus Callosum (NODCC) NODCC's mission is to enhance the quality of life of individuals with agenesis of the corpus callosum and other disorders of the corpus callosum by gathering and disseminating information regarding these conditions. 

Aicardi Syndrome 

Aicardi Syndrome The Aicardi syndrome website provides information and comfort to families and friends of girls diagnosed with Aicardi syndrome. 

Albinism Hypopigmentation 

National Organization for Albinism and Hypopigmentation (NOAH) NOAH is a US-based nonprofit, tax-exempt organization that offers information and support to people with albinism, their families, and the professionals who work with them. 

Alopecia Areata 

National Alopecia Areata Foundation (NAAF) The NAAF supports research to find a cure or acceptable treatment for alopecia areata, supports those with the disease, and educates the public about alopecia areata. 

Alpha-1-Antitrypsin (AAT) Deficiency 

Alpha-1 Association The Alpha-1 Association is a member-based nonprofit organization dedicated to identifying those affected by alpha-1 antitrypsin deficiency (Alpha-1); improving the quality of their lives through support, education, and advocacy; and encouraging participation in research.  

Alström Syndrome 

Alström Syndrome International (ASI) ASI is a nonprofit, tax-exempt charity that provides support, information, and coordination worldwide to families and professionals in order to treat and cure Alström syndrome. The ASI website contains information on the organization and information targeted specifically for families and service providers. 

Anophthalmia 

International Children's Anophthalmia Network (ican) ican is a parent support group for families with a child with anophthalmia or microphthalmia. The ican website provides a bulletin board for the latest information about the organization, issues of the organization’s family newsletter, a brochure for the organization, and contact information for the organization. 

Angelman Syndrome 

Angelman Syndrome Foundation (ASF) The ASF strives to advance the awareness and treatment of Angelman syndrome through education and information, research and support for individuals with Angelman syndrome, their families, and other concerned parties. The ASF website provides information on research, resources for families, a listing of upcoming educational events, and information targeted specifically to health care professionals. 

Anorectal Malformations 

Pull-thru Network (PTN) The PTN was organized as a chapter of the United Ostomy Association by a group of families whose children were born with an anorectal malformation. The PTN is dedicated to the support and information needs of the families of children born with imperforate anus, cloaca, cloaca exstrophy, bladder exstrophy, VATER syndrome, Hirschsprung’s disease, and other related birth anomalies. The PTN website contains information and resources on medical topics, educational resources, support resources, and advocacy resources. 

Anorexia Nervosa 

National Eating Disorder Association (NEDA) The NEDA is a nonprofit organization in the United States working to prevent eating disorders and provide treatment referrals to those suffering from anorexia, bulimia and binge eating disorder and those concerned with body image and weight issues. The NEDA website provides information on the organization, descriptions of programs and events, information and resources, descriptions of research efforts, and a method for individuals to become involved. 

Aphasia 

National Aphasia Association (NAA) NAA is a nonprofit organization that promotes public education, research, rehabilitation and support services to assist people with aphasia and their families. 

Aplastic Anemia 

Aplastic Anemia and Myelodysplastic Syndromes (MDS) International Foundation, Inc. (AA&MDSIF) The AA&MDSIF is the largest patient advocate and support organization for bone marrow diseases, providing life-saving hope, knowledge, and support to hundreds of thousands of patients and their families. 

Apraxia

 Cherab Foundation The Cherab Foundation is a worldwide nonprofit organization working to improve the communication skills and education of all children with speech and language delays and disorders with an emphasis on verbal and oral apraxia, severe neurologically-based speech and language disorders that hinder children's ability to speak. 

The Childhood Apraxia of Speech Association of North America (CASANA) CASANA is a nonprofit, tax-exempt, publicly-funded charity whose mission is to strengthen the support systems in the lives of children with apraxia so that each child is afforded their best opportunity to develop speech. 

Arnold Chiari Malformation 

National Institute of Neurological Disorders and Stroke (NINDS) NINDS reduces the burden of neurological disease by conducting, fostering, coordinating, guiding and supporting research on the causes, prevention, diagnosis and treatment of neurological disorders and stroke. 

Arthritis

Arthritis Foundation The Arthritis Foundation is a national nonprofit organization that helps people take control of arthritis by providing public health education; pursuing public policy and legislation; and conducting evidence-based programs to improve the quality of life for those living with arthritis. 

National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) As part of the National Institutes of Health, NIAMS supports research into the causes, treatment and prevention of arthritis and musculoskeletal and skin diseases, trains basic and clinical scientists to carry out this research, and disseminates information on research progress in these diseases. 

Asthma & Allergy 

Allergy & Asthma Network Mothers of Asthmatics (AANMA) AANMA is a national nonprofit family health organization dedicated to eliminating suffering and death due to asthma, allergies, and other related conditions. The AANMA website provides information on the organization, a listing of publications, answers to frequently asked questions, information related to advocacy, recent press releases, and information for membership in the organization. 

Asthma and Allergy Foundation of America (AAFA) The AAFA is a nonprofit organization that is dedicated to improving the quality of life for people with asthma and allergic diseases through education, advocacy, and research. 

Ataxia 

National Ataxia Foundation The National Ataxia Foundation is a nonprofit organization dedicated to improving the lives of persons affected by ataxia through support, education, and research. 

Ataxia-telangiectasia 

Ataxia Telangiectasia Children’s Project (A-T Children's Project) The A-T Children's Project is was formed to raise funds through events and contributions from corporations, foundations, and friends. These funds are then used to accelerate first-rate, international scientific research aimed at finding a cure and improving the lives of all children with ataxia-telangiectasia. 

Attention Deficit Disorder (ADD) 

Attention Deficit Disorder Association (ADDA) The ADDA is an adult Attention Deficit/ Hyperactivity Disorder (AD/HD) organization that provides information, resources and networking opportunities to help adults with AD/HD lead better lives. 

Children & Adults with ADD (CHADD) CHADD is a nonprofit organization serving individuals with AD/HD and their families by offering support for individuals, parents, teachers, professionals and others. The CHADD website provides information on AD/HD, resources for finding support, a listing of upcoming conferences and training sessions, and information for membership in the organization. 

Autism 

Autism National Committee (AUTCOM) AUTCOM is an advocacy organization dedicated protecting and advocating the human rights and civil rights of preserving of all persons with autism, pervasive developmental disorder, and related differences of communication and behavior. The AUTCOM website contains the most recent issue of the AUTCOM newsletter; updates on politics and judicial decisions; commentary by people with autism; information about developmental and relationship-based approaches to early intervention and education; coverage of issues affecting community living, home ownership, and consumer choice; and advocacy for access to augmentative, assistive and facilitated communication. 

Autism Society of America The Autism Society of America promotes lifelong access and opportunity for all individuals within the autism spectrum so that they can be fully participating, included members of the community. The Autism Society of America website provides information on the organization, information about living with autism, descriptions of research and programs, and a link to an autism community. 

Autism Services North Autism Services North is a TRICARE-approved Applied Behavior Analysis (ABA) provider serving military families in TRICARE's North, West, and South regions. The Autism Services North website provides information on the organization, answers to frequently asked questions, a listing of providers, and a section dedicated to military families. 

Cleveland Clinic Children's Hospital Center for Autism Located in Cleveland, Ohio, the Center for Autism offers programs including, but not limited to, behavioral health services, diagnostic services, and workshops. The Cleveland Clinic Children’s Hospital Center for Autism website provides information on the programs and services offered, information on therapy and rehabilitation, and a map of center locations. 

Kennedy Krieger Institute, Center for Autism and Related Disorders Kennedy Krieger's clinical programs offer an interdisciplinary approach in treatment tailored to the individual needs of each child. Services include over forty outpatient clinics; neurobehavioral, pediatric feeding disorders, and rehabilitation inpatient units; plus several home and community programs providing services to assist families. 

Operation Autism; A Resource Guide for Military Families Sponsored and maintained by the Organization for Autism Research (OAR), Operation Autism directly supports United States military families touched by autism and autism spectrum disorders. It serves as an introduction to autism, a guide for the life journey with autism, and a ready reference for available resources, services, and support. 

Treatment and Education of Autistic and Communication Related Handicapped Children (TEACCH) Operated by the University of North Carolina School of Medicine, TEACCH is an evidence-based service, training and research program for individuals of all ages and skill levels with autism spectrum disorders. The TEACCH website provides information about autism; regional centers' programs and services; educational approaches; research; and links to TEACCH training in the state of North Carolina. 

The Dan Marino Foundation The Dan Marino Foundation strives to "open doors" towards independence for children with special needs, teenagers transitioning from foster care, and young adults with disabilities. The foundation supports comprehensive, integrated treatment programs, provides outreach services, advances scientific research, and builds independence through employment and daily living transition programs. 

The Doug Flutie Jr. Foundation for Autism, Inc. The Doug Flutie Jr. Foundation for Autism promotes awareness and supports families affected by autism spectrum disorders. The foundation aids financially disadvantaged families who need assistance in caring for their children with autism; funds education and research into the causes and consequences of childhood autism; and serves as a clearinghouse and communications center for new programs and services developed for individuals with autism. 

The Autism Program at Yale The Autism Program at Yale is an interdisciplinary group of clinicians and scholars dedicated to providing comprehensive clinical services to children with autism spectrum disorders and their families. The Yale Developmental Disabilities Clinic offers comprehensive, multidisciplinary evaluations for children with social disabilities, usually focusing on the issues of diagnosis and intervention. 

Autoimmune Disorders 

American Autoimmune Related Diseases Association (AARDA) The AARDA is a national, nonprofit health agency that fosters and facilitates collaboration in the areas of education, public awareness, and research and patient services in an effective, ethical, and efficient manner. The AARDA website provides information about the organization, a newsletter, information about autoimmune diseases, upcoming events, and a section related to advocacy.

Balance and Dizziness Disorders

EAR Foundation The Ear Foundation website has been designed to be a resource to provide information to people who suffer from impaired hearing as well as for the people who live and work with these individuals. 

Barth Syndrome

Barth Syndrome Foundation (BSF) BSF is a worldwide volunteer organization dedicated to saving lives through education, advances in treatment and pursuit of a cure for Barth syndrome. BSF strives to accelerate progress through collaboration between families and scientists, encourages family participation in research, and provides several ways for families to keep informed about advances in science and medicine.

Batten Disease

Batten Disease Support and Research Association (BDSRA) The BDSRA is an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as Batten Disease. The BDSRA provides information related to Batten Disease, supports families, and promotes research efforts related to the disease.

Beckwith-Wiedemann Syndrome

Beckwith-Wiedemann Support Network (BWSN) The BWSN is a nonprofit organization created for parents, professionals and others interested in the Beckwith-Wiedemann Syndrome. (This website has a parent forum.) 

Bone & Marrow Transplant

Blood & Marrow Transplant Information Network (BMTinfonet.org) BMTinfonet.org is a nonprofit organization dedicated exclusively to serving the needs of persons facing a bone marrow, blood stem cell, or umbilical cord blood transplant. The BMTinfonet.org website provides information on the organization, information targeted specifically to patients and families, publications and products, and a listing of transplant centers.

Brain Injury

Brain Injury Association of America (BIAA) BIAA is a leading national organization serving and representing individuals, families, and professionals who are touched by a life-altering, often devastating, traumatic brain injury (TBI). The BIAA website provides information on the organization, information on brain injury, contact information for state offices, media and events, policy and legislation, and links to current TBI research.

Brain Tumor

National Brain Tumor Society (NBTS) The NBTS brings together brain tumor research and patient services to be a comprehensive resource for patients, families, caregivers, researchers, and medical professionals.

Children's Brain Tumor Foundation The Children's Brain Tumor Foundation is a nonprofit organization that strives to  improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors.  The Children’s Brain Tumor Foundation website provides information and resources on brain tumors, an online community for families to find connections and support, a listing of upcoming events, and information specifically targeted to professionals.

Burns

Phoenix Society for Burn Survivors The Phoenix Society for Burn Survivors is a national nonprofit organization dedicated to empowering anyone affected by a burn injury through peer support, education, and advocacy. The Phoenix Society for Burn Survivors partners with survivors, families, health care professionals, burn centers, and the fire industry to support recovery, improve the quality of burn care, and prevent burn injury. The Phoenix Society for Burn Survivors website provides information about the organization, descriptions of current programs, a support network for burn survivors, and a resources center for families and caregivers.

Cancer

American Cancer Society The American Cancer Society is a nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. The American Cancer Society website provides information about cancer, information to help people stay healthy, resources for finding support and treatment, and descriptions of current research related to cancer.

American Childhood Cancer Organization (ACCO) The ACCO is a grassroots, national organization dedicated to improving the lives of children and adolescents with cancer and their families through support, education, and advocacy. The ACCO website contains information on the organization and childhood cancer, awareness materials, advocacy materials, descriptions of current research, and a listing of affiliates.

CureSearch for Children's Cancer CureSearch for Children's Cancer raises private funds for childhood cancer research for the Children's Oncology Group, the world's largest cooperative cancer research organization. The CureSearch for Children's Cancer website provides information specifically targeted to parents/families, patients and friends/community; descriptions of funded research; a listing of upcoming events; and links to related news and media.

Celiac Disease

Celiac Disease Foundation (CDF) The CDF is a national organization that strives to promote awareness and build a supportive community for patients, families, and health care professionals by advocating for people affected by celiac disease/dermatitis herpetiformis. The CDF website provides information on celiac disease, tips for having a gluten-free diet and lifestyle, awareness materials, a listing of upcoming events, and additional resources.

Celiac Sprue Association (CSA) CSA is a national education organization that provides information and referral services for persons with the conditions of nontropical sprue (celiac disease) and dermatitis herpetiformis and for parents of celiac children. The CSA website provides information about the organization, corporate programs, awareness materials, and recent news.

Cerebral Palsy

Kennedy Krieger Institute Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine Kennedy Krieger Institute is an internationally recognized institution located in Baltimore, Maryland dedicated to improving the lives of children and adolescents with pediatric developmental disabilities through patient care, special education, research, and professional training. The Kennedy Krieger Institute's cerebral palsy website provides information on related clinical programs, related school programs, research, news articles, and additional resources.

United Cerebral Palsy (UCP) UCP is a nonprofit organization that strives to advance the independence, productivity, and full citizenship of people with disabilities through an affiliate network of approximately 100 local service providers reaching more than 176,000 individuals and their families daily in the United States, Australia, Canada, and the United Kingdom. The UCP website provides information on the organization, employment of persons with disabilities, health and wellness, housing, sports and leisure, and transportation, as well as a listing of products and services available from the organization.

Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth Association (CMTA) The CMTA is a nonprofit, tax-exempt organization that provides patient support, public education, promotion of research and ultimately the treatment and cure of Charcot-Marie-Tooth disease. The CMTA website provides a list of support groups and publications about Charcot-Marie-Tooth disease.

CHARGE Syndrome

CHARGE Syndrome Foundation, Inc. The CHARGE Syndrome Foundation, Inc. is a nonprofit, charitable organization that gathers, develops, maintains and distributes information about CHARGE syndrome and promotes awareness and research regarding its identification, cause, and management. The CHARGE Syndrome Foundation website provides information and resources about CHARGE, information about the foundation, and membership information.

Chronic Fatigue Syndrome 

Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America The CFIDS Association of America is a charitable organization dedicated to stimulating research aimed at the early detection, objective diagnosis, and effective treatment of CFIDS through expanded public, private and commercial investment. The CFIDS Association of America offers information and resources to patients, family members, caregivers, support groups, media, professionals, the general public, and health care professionals.

Cleft Palate

SMILES SMILES is a group of dedicated families who have developed a first-hand understanding of the needs of children with cleft lip, cleft palate, and craniofacial deformities. The SMILES website provides information on the organization, an overview of cleft lip and palate management, advice from otolaryngologists on craniofacial related issues, information on the effects on speech and language development, and a section for caring for a child after cleft palate repair.

Cleft Palate Foundation (CPF) The CPF is a nonprofit organization dedicated to optimizing the quality of life for individuals affected by facial birth defects by providing essential information and research. CPF also operates the CLEFTLINE (1-800-24-CLEFT), a toll-free service providing information to callers about clefts and other craniofacial anomalies. The CPF website provides information specifically targeted to parents, individuals, and health care providers.

Coffin-Lowry Syndrome

Coffin-Lowry Syndrome Foundation (CLSF) The CLSF provides a clearinghouse for information on Coffin-Lowry syndrome (CLS) and provides families affected by CLS a general forum in which to exchange information, ideas, and advice.  The CLSF website provides information on the syndrome, literature, links, articles, research, and other resources related to CLS, as well as a section for parent contacts.

Connective Tissue Disorders

National Marfan Foundation (NMF) The NMF is a voluntary organization that disseminates accurate and timely information about the condition to patients, family members and the health care community; provides a network of communications for patients and relatives to share experiences, support one another, and improve their medical care; and supports and fosters research. The NMF website provides information about Marfan syndrome, about living with the syndrome, and about related disorders, and provides links to current research and advocacy related to the syndrome.

Cooley's Anemia & Thalassemia

Cooley's Anemia Foundation (CAF) The CAF strives to advance the treatment and cure for various forms of thalassemia (most notably the major form of this genetic blood disease, Cooley's anemia/thalassemia major), enhance the quality of life of patients, and educate the medical professional, trait carriers, and the public about Cooley's anemia/thalassemia major. The CAF website provides information for patients and their families, medical personnel, donors, foundation volunteers, and anyone interested in learning about Cooley's anemia and other forms of the genetic blood disorder, thalassemia.

Cornelia de Lange Syndrome

The Cornelia de Lange Syndrome (CdLS) Foundation The CdLS Foundation is a nonprofit, tax-exempt, voluntary health organization that provides services to attract, educate and unite families touched by CdLS. The CdLS Foundation website provides information on the syndrome, links to research related to CdLS, opportunities for individuals to become involved, and a forum for families to connect to one another.

Craniofacial Disorders

Children's Craniofacial Association (CCA) The CCA is a national, nonprofit, tax-exempt organization dedicated to improving the quality of life for people with facial differences and their families. The CCA website provides an overview of the organization, descriptions of the programs and services available through the organization, news, and family networking opportunities.

FACES: The National Craniofacial Association FACES: The National Craniofacial Association is a nonprofit organization serving children and adults throughout the United States with severe craniofacial deformities resulting from birth defects, injuries, or disease. The FACES website provides information and resources on twenty-eight specific craniofacial disorders, networking resources for families, resource files of specialized craniofacial centers, financial aid information, and links to quarterly newsletters.

Forward Face Forward Face is a nonprofit organization that strives to help children and their families find immediate support to manage the medical and social effects of facial differences by working to educate, advocate, and raise public awareness about craniofacial conditions. The Forward Face website provides information about the organization, descriptions of the services provided, educational materials on facial conditions, a listing of news and events, and a link to a support group of teens and adults with craniofacial conditions.

The National Foundation for Facial Reconstruction (NFFR) The NFFR is a nonprofit, tax-exempt organization that addresses the plight of children with a facial disfigurement by supporting state-of-the-art treatment, innovative research, psychosocial support, and medical training that inspires a new generation of pediatric doctors. The NFFR website provides information on the organization, links to getting help, descriptions of upcoming events, and contact information for the organization.

Cri Du Chat Syndrome

Five P Minus (5p-) Society The Five P Minus Society is a nonprofit corporation that serves as a parent support group for families having a child with 5p- Syndrome, also known as Cat Cry Syndrome or Cri du Chat Syndrome. The Five P Minus Society provides information about the syndrome to other families and provides the opportunity for parents to meet and share common experiences. The Five P Minus Society website provides information on the syndrome, a description of the society's role, a newsletter, and key resources.

Crohn's Disease & Colitis

The Crohn's and Colitis Foundation of America (CCFA) The CCFA is a nonprofit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. The CCFA website provides information about the organization, the opportunity to donate to the foundation, the opportunity to join the foundation, and the ability to locate clinical trials and physicians.

Cyclic Vomiting Syndrome

Cyclic Vomiting Syndrome Association (CVSA) CVSA is network of volunteers and medical advisors that serve the needs of cyclic vomiting syndrome (CVS) sufferers, their families and professional care givers by raising awareness and providing education and support to those affected by cyclic vomiting, abdominal migraine and related disorders while advocating for and funding research. The CVSA website provides information on the organization, a listing of current events, a resource center, and a message board.

Cystic Fibrosis

Cystic Fibrosis Foundation (CFF) The CFF is a nonprofit donor-supported organization that strives to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. The Foundation is funds and accredits more than 115 cystic fibrosis (CF) care centers, ninety-five adult care programs and fifty affiliate programs, and more than seventy-five chapters and branch offices nationwide. The CFF website provides information and resources for those living with CF, descriptions of treatment options, overviews of related research, and the ability to find a local chapter and clinical trial.

Cystinosis

Cystinosis Research Network (CRN) CRN is an all-volunteer, nonprofit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis. The CRN website provides information on cystinosis, links for finding family support, descriptions of related research, news and a listing of upcoming events.

Cystinuria

Cystinuria Support Network The Cystinuria Support Network provides a resource for putting individuals in touch with each other for support and practices advice. The Cystinuria Support Network website provides information on the prevention, symptoms, diagnosis, and treatment of cystinuria, as well as articles, personal stories, and contacts from the network.

Balance and Dizziness Disorders

EAR Foundation The Ear Foundation website has been designed to be a resource to provide information to people who suffer from impaired hearing as well as for the people who live and work with these individuals. 

Barth Syndrome

Barth Syndrome Foundation (BSF) BSF is a worldwide volunteer organization dedicated to saving lives through education, advances in treatment and pursuit of a cure for Barth syndrome. BSF strives to accelerate progress through collaboration between families and scientists, encourages family participation in research, and provides several ways for families to keep informed about advances in science and medicine.

Batten Disease

Batten Disease Support and Research Association (BDSRA) The BDSRA is an international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as Batten Disease. The BDSRA provides information related to Batten Disease, supports families, and promotes research efforts related to the disease.

Beckwith-Wiedemann Syndrome

Beckwith-Wiedemann Support Network (BWSN) The BWSN is a nonprofit organization created for parents, professionals and others interested in the Beckwith-Wiedemann Syndrome. (This website has a parent forum.) 

Bone & Marrow Transplant

Blood & Marrow Transplant Information Network (BMTinfonet.org) BMTinfonet.org is a nonprofit organization dedicated exclusively to serving the needs of persons facing a bone marrow, blood stem cell, or umbilical cord blood transplant. The BMTinfonet.org website provides information on the organization, information targeted specifically to patients and families, publications and products, and a listing of transplant centers.

Brain Injury

Brain Injury Association of America (BIAA) BIAA is a leading national organization serving and representing individuals, families, and professionals who are touched by a life-altering, often devastating, traumatic brain injury (TBI). The BIAA website provides information on the organization, information on brain injury, contact information for state offices, media and events, policy and legislation, and links to current TBI research.

Brain Tumor

National Brain Tumor Society (NBTS) The NBTS brings together brain tumor research and patient services to be a comprehensive resource for patients, families, caregivers, researchers, and medical professionals.

Children's Brain Tumor Foundation The Children's Brain Tumor Foundation is a nonprofit organization that strives to  improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors.  The Children’s Brain Tumor Foundation website provides information and resources on brain tumors, an online community for families to find connections and support, a listing of upcoming events, and information specifically targeted to professionals.

Burns

Phoenix Society for Burn Survivors The Phoenix Society for Burn Survivors is a national nonprofit organization dedicated to empowering anyone affected by a burn injury through peer support, education, and advocacy. The Phoenix Society for Burn Survivors partners with survivors, families, health care professionals, burn centers, and the fire industry to support recovery, improve the quality of burn care, and prevent burn injury. The Phoenix Society for Burn Survivors website provides information about the organization, descriptions of current programs, a support network for burn survivors, and a resources center for families and caregivers.

Cancer

American Cancer Society The American Cancer Society is a nationwide community-based voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer, through research, education, advocacy, and service. The American Cancer Society website provides information about cancer, information to help people stay healthy, resources for finding support and treatment, and descriptions of current research related to cancer.

American Childhood Cancer Organization (ACCO) The ACCO is a grassroots, national organization dedicated to improving the lives of children and adolescents with cancer and their families through support, education, and advocacy. The ACCO website contains information on the organization and childhood cancer, awareness materials, advocacy materials, descriptions of current research, and a listing of affiliates.

CureSearch for Children's Cancer CureSearch for Children's Cancer raises private funds for childhood cancer research for the Children's Oncology Group, the world's largest cooperative cancer research organization. The CureSearch for Children's Cancer website provides information specifically targeted to parents/families, patients and friends/community; descriptions of funded research; a listing of upcoming events; and links to related news and media.

Celiac Disease

Celiac Disease Foundation (CDF) The CDF is a national organization that strives to promote awareness and build a supportive community for patients, families, and health care professionals by advocating for people affected by celiac disease/dermatitis herpetiformis. The CDF website provides information on celiac disease, tips for having a gluten-free diet and lifestyle, awareness materials, a listing of upcoming events, and additional resources.

Celiac Sprue Association (CSA) CSA is a national education organization that provides information and referral services for persons with the conditions of nontropical sprue (celiac disease) and dermatitis herpetiformis and for parents of celiac children. The CSA website provides information about the organization, corporate programs, awareness materials, and recent news.

Cerebral Palsy

Kennedy Krieger Institute Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine Kennedy Krieger Institute is an internationally recognized institution located in Baltimore, Maryland dedicated to improving the lives of children and adolescents with pediatric developmental disabilities through patient care, special education, research, and professional training. The Kennedy Krieger Institute's cerebral palsy website provides information on related clinical programs, related school programs, research, news articles, and additional resources.

United Cerebral Palsy (UCP) UCP is a nonprofit organization that strives to advance the independence, productivity, and full citizenship of people with disabilities through an affiliate network of approximately 100 local service providers reaching more than 176,000 individuals and their families daily in the United States, Australia, Canada, and the United Kingdom. The UCP website provides information on the organization, employment of persons with disabilities, health and wellness, housing, sports and leisure, and transportation, as well as a listing of products and services available from the organization.

Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth Association (CMTA) The CMTA is a nonprofit, tax-exempt organization that provides patient support, public education, promotion of research and ultimately the treatment and cure of Charcot-Marie-Tooth disease. The CMTA website provides a list of support groups and publications about Charcot-Marie-Tooth disease.

CHARGE Syndrome

CHARGE Syndrome Foundation, Inc. The CHARGE Syndrome Foundation, Inc. is a nonprofit, charitable organization that gathers, develops, maintains and distributes information about CHARGE syndrome and promotes awareness and research regarding its identification, cause, and management. The CHARGE Syndrome Foundation website provides information and resources about CHARGE, information about the foundation, and membership information.

Chronic Fatigue Syndrome 

Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America The CFIDS Association of America is a charitable organization dedicated to stimulating research aimed at the early detection, objective diagnosis, and effective treatment of CFIDS through expanded public, private and commercial investment. The CFIDS Association of America offers information and resources to patients, family members, caregivers, support groups, media, professionals, the general public, and health care professionals.

Cleft Palate

SMILES SMILES is a group of dedicated families who have developed a first-hand understanding of the needs of children with cleft lip, cleft palate, and craniofacial deformities. The SMILES website provides information on the organization, an overview of cleft lip and palate management, advice from otolaryngologists on craniofacial related issues, information on the effects on speech and language development, and a section for caring for a child after cleft palate repair.

Cleft Palate Foundation (CPF) The CPF is a nonprofit organization dedicated to optimizing the quality of life for individuals affected by facial birth defects by providing essential information and research. CPF also operates the CLEFTLINE (1-800-24-CLEFT), a toll-free service providing information to callers about clefts and other craniofacial anomalies. The CPF website provides information specifically targeted to parents, individuals, and health care providers.

Coffin-Lowry Syndrome

Coffin-Lowry Syndrome Foundation (CLSF) The CLSF provides a clearinghouse for information on Coffin-Lowry syndrome (CLS) and provides families affected by CLS a general forum in which to exchange information, ideas, and advice.  The CLSF website provides information on the syndrome, literature, links, articles, research, and other resources related to CLS, as well as a section for parent contacts.

Connective Tissue Disorders

National Marfan Foundation (NMF) The NMF is a voluntary organization that disseminates accurate and timely information about the condition to patients, family members and the health care community; provides a network of communications for patients and relatives to share experiences, support one another, and improve their medical care; and supports and fosters research. The NMF website provides information about Marfan syndrome, about living with the syndrome, and about related disorders, and provides links to current research and advocacy related to the syndrome.

Cooley's Anemia & Thalassemia

Cooley's Anemia Foundation (CAF) The CAF strives to advance the treatment and cure for various forms of thalassemia (most notably the major form of this genetic blood disease, Cooley's anemia/thalassemia major), enhance the quality of life of patients, and educate the medical professional, trait carriers, and the public about Cooley's anemia/thalassemia major. The CAF website provides information for patients and their families, medical personnel, donors, foundation volunteers, and anyone interested in learning about Cooley's anemia and other forms of the genetic blood disorder, thalassemia.

Cornelia de Lange Syndrome

The Cornelia de Lange Syndrome (CdLS) Foundation The CdLS Foundation is a nonprofit, tax-exempt, voluntary health organization that provides services to attract, educate and unite families touched by CdLS. The CdLS Foundation website provides information on the syndrome, links to research related to CdLS, opportunities for individuals to become involved, and a forum for families to connect to one another.

Craniofacial Disorders

Children's Craniofacial Association (CCA) The CCA is a national, nonprofit, tax-exempt organization dedicated to improving the quality of life for people with facial differences and their families. The CCA website provides an overview of the organization, descriptions of the programs and services available through the organization, news, and family networking opportunities.

FACES: The National Craniofacial Association FACES: The National Craniofacial Association is a nonprofit organization serving children and adults throughout the United States with severe craniofacial deformities resulting from birth defects, injuries, or disease. The FACES website provides information and resources on twenty-eight specific craniofacial disorders, networking resources for families, resource files of specialized craniofacial centers, financial aid information, and links to quarterly newsletters.

Forward Face Forward Face is a nonprofit organization that strives to help children and their families find immediate support to manage the medical and social effects of facial differences by working to educate, advocate, and raise public awareness about craniofacial conditions. The Forward Face website provides information about the organization, descriptions of the services provided, educational materials on facial conditions, a listing of news and events, and a link to a support group of teens and adults with craniofacial conditions.

The National Foundation for Facial Reconstruction (NFFR) The NFFR is a nonprofit, tax-exempt organization that addresses the plight of children with a facial disfigurement by supporting state-of-the-art treatment, innovative research, psychosocial support, and medical training that inspires a new generation of pediatric doctors. The NFFR website provides information on the organization, links to getting help, descriptions of upcoming events, and contact information for the organization.

Cri Du Chat Syndrome

Five P Minus (5p-) Society The Five P Minus Society is a nonprofit corporation that serves as a parent support group for families having a child with 5p- Syndrome, also known as Cat Cry Syndrome or Cri du Chat Syndrome. The Five P Minus Society provides information about the syndrome to other families and provides the opportunity for parents to meet and share common experiences. The Five P Minus Society website provides information on the syndrome, a description of the society's role, a newsletter, and key resources.

Crohn's Disease & Colitis

The Crohn's and Colitis Foundation of America (CCFA) The CCFA is a nonprofit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis. The CCFA website provides information about the organization, the opportunity to donate to the foundation, the opportunity to join the foundation, and the ability to locate clinical trials and physicians.

Cyclic Vomiting Syndrome

Cyclic Vomiting Syndrome Association (CVSA) CVSA is network of volunteers and medical advisors that serve the needs of cyclic vomiting syndrome (CVS) sufferers, their families and professional care givers by raising awareness and providing education and support to those affected by cyclic vomiting, abdominal migraine and related disorders while advocating for and funding research. The CVSA website provides information on the organization, a listing of current events, a resource center, and a message board.

Cystic Fibrosis

Cystic Fibrosis Foundation (CFF) The CFF is a nonprofit donor-supported organization that strives to assure the development of the means to cure and control cystic fibrosis and to improve the quality of life for those with the disease. The Foundation is funds and accredits more than 115 cystic fibrosis (CF) care centers, ninety-five adult care programs and fifty affiliate programs, and more than seventy-five chapters and branch offices nationwide. The CFF website provides information and resources for those living with CF, descriptions of treatment options, overviews of related research, and the ability to find a local chapter and clinical trial.

Cystinosis

Cystinosis Research Network (CRN) CRN is an all-volunteer, nonprofit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis. The CRN website provides information on cystinosis, links for finding family support, descriptions of related research, news and a listing of upcoming events.

Cystinuria

Cystinuria Support Network The Cystinuria Support Network provides a resource for putting individuals in touch with each other for support and practices advice. The Cystinuria Support Network website provides information on the prevention, symptoms, diagnosis, and treatment of cystinuria, as well as articles, personal stories, and contacts from the network.

American Association of the Deaf-Blind (AADB) The AADB is a nonprofit, tax-exempt national consumer organization of, by and for deaf-blind Americans and their supporters. The AADB strives to ensure that all deaf-blind persons achieve their maximum potential through increased independence, productivity, and integration into the community. The AADB website provides information and resources related to the support service providers, technology, answers to frequently asked questions, upcoming national conferences, and publications. 

National Family Association for Deaf-Blind (NFADB) NFADB is a nonprofit, volunteer-based family association whose philosophy is that individuals who are deaf-blind are valued members of society and are entitled to the same opportunities and choices as other members of the community. The NFADB website provides information on the organization, resources and links, and state resources. 

National Consortium on Deaf-Blindness (NCDB) The NCDB is a national technical assistance and dissemination center for children and youth who are deaf-blind. The NCDB works collaboratively with families, as well as federal, state, and local agencies to provide technical assistance, information, and personnel training. 

Diabetes 

American Diabetes Association (ADA) The ADA strives to prevent and cure diabetes and to improve the lives of all people affected by diabetes by funding research, publishing scientific findings, and providing information and other services to people with diabetes, their families, health care professionals and the public. The ADA is also actively involved in advocating for scientific research and for the rights of people with diabetes. The ADA website provides information on diabetes basics, living with diabetes, food and fitness, and community efforts, as well as news and research. 

Juvenile Diabetes Research Foundation International (JRDF) The JDRF strives to find a cure for diabetes and its complications through the support of research. The JDRF website provides information on current research, information targeted specifically to scientists, a listing of locations, information about living with diabetes, publications, and advocacy information. 

Down Syndrome 

Association for Children with Down Syndrome (ACDS) ACDS is dedicated to providing lifetime resources of exceptional quality, innovation, and inclusion for individuals with Down syndrome and other developmental disabilities and their families. The ACDS website provides information on the organization, descriptions of available services, and listings of upcoming events. 

National Down Syndrome Society (NDSS) The NDSS strives to be the national advocate for the value, acceptance and inclusion of people with Down syndrome so that all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. The NDSS website provides information about down syndrome; education, development, and community life materials; health care information; and policy, research, and self-advocate information. 

National Down Syndrome Congress (NDSC) The NDSC provides information, advocacy, and support concerning all aspects of life for individuals with Down syndrome. The NDSC website provides information about the organization, current news and upcoming events, informational resources, legislative resources and methods to contact legislators, and information for self-advocates. 

Dysautonomia 

The National Dysautonomia Research Foundation (NDRF) The NDRF is a nonprofit foundation established to help those who are afflicted with any of the various forms of Dysautonomia. The NDRF website provides information on Dysautonomia, resources to help find a specialist, a discussion forum, and contact information for the organization. 

Dyslexia 

Dyslexia Research Institute, Inc. The Dyslexia Research Institute's goal is to change the perception of learning differences, specifically in the area of dyslexia and attention deficit disorders (ADD) and to help dyslexics and individuals with ADD become successful individuals using their talents and skills to enrich society. The Dyslexia Research Institute's website provides information on the organization, resources to help identify, a listing of available services, information about upcoming seminars and current research projects, and additional resources and materials. 

The International Dyslexia Association (IDA) The IDA is a nonprofit organization dedicated to helping individuals with dyslexia, their families, and the communities that support them. The IDA website provides information and resources related to dyslexia, tools to help find a provider, a listing of branches and global partners, information about upcoming conferences, and publications from the organization. 

Dystonia 

Dystonia Medical Research Foundation (DMRF) The DMRF is a nonprofit, tax-exempt organization dedicated to serving all people with dystonia and their families. The DMRF website provides information about dystonia, news and events related to dystonia, research related to dystonia, and information and resources to help individuals live with dystonia. 

Ectodermal Dysplasias

 National Foundation for Ectodermal Dysplasias (NFED) The NFED provides and supports education and research for people touched by ectodermal dysplasias. The NFED website provides information on news and events, information about ectodermal dysplasias, resources for support, descriptions, or research, and information about the organization. 

Ehlers-Danlos Syndrome 

Ehlers-Danlos National Foundation (EDNF) The EDNF provides emotional support and the latest information to those affected by Ehlers-Danlos syndrome (EDS). The EDNF website provides information about EDS, information for medical professionals, and current news. 

Epidermolysis Bullosa Dystrophic 

Dystrophic Epidermolysis Bullosa Research Association of America (Debra) Debra is a national nonprofit organization dedicated to both promoting research to find new treatments and a cure for epidermolysis bullosa (EB) and providing information and support for people with EB and their families. The Debra website provides information for understanding EB, information about the organization, details regarding available programs and services, a "family center" that provides information for families, and an online community called "Debra Nation." 

Epilepsy 

American Epilepsy Society (AES) AES promotes research and education for professionals dedicated to the prevention, treatment, and cure of epilepsy. The AES website provides information on the organization, educational information for professionals, a listing of upcoming meetings and events, and information on research and publications. 

Essential Tremor 

International Essential Tremor Foundation (IETF) IETF was created to provide information, services, and support to individuals and families affected by essential tremor (ET). The organization encourages and promotes research in an effort to determine the causes, treatment, and ultimately the cure for ET. The IETF website provides information for the newly diagnosed, research, community information, and additional resources. 

Exostoses 

The Multiple Hereditary Exostoses Coalition The MHE Coalition was formed to provide support and information to people living with multiple hereditary exostoses ("MHE") and to reach out to MHE-affected individuals and families throughout the world. This organization is dedicated to promoting and encouraging research to find the causes, treatments and ultimately the cure for this rare bone disease. 

Facioscapulohumeral Muscular Dystrophy 

Facioscapulohumeral (FSH) Society, Inc. The FSH Society addresses issues and needs related to Facioscapulohumeral muscular dystrophy. The FSH Society website provides information on the organization, information specifically targeted at patients and scientists, current research, links to community and reference, and news and events. 

Fatty Oxidation Disorder 

Fatty Oxidation Disorder (FOD) Family Support Group FOD Family Support Group is intended to be used as a resource for families, friends, doctors, researchers and others who would like to support, educate and provide a forum for the sharing of ideas and concerns for those whose lives have been touched by a fatty oxidation disorder. 

Fetal Alcohol Syndrome 

Pregnancy and Alcohol.org Pregnancy and Alcohol.org provides information on women, alcohol, and pregnancy. The website provides current information and resources, answers questions, and shares referral sources regarding issues related to women, alcohol, and pregnancy, including fetal alcohol spectrum disorders (FASD). 

National Organization on Fetal Alcohol Syndrome (NOFAS) NOFAS is dedicated to eliminating birth defects caused by alcohol consumption during pregnancy and improving the quality of life for those individuals and families affected. The NOFAS website provides information specifically targeted for educators, health care professionals, and expectant mothers, as well as advocacy information and information for living with FASD. 

Fetal Alcohol Syndrome (FAS) Family Resource Institute The FAS Family Resource Institute strives to identify, understand, and care for individuals disabled by prenatal alcohol exposure and their families, and to prevent future generations from having to live with this disability. The FAS Family Resource Institute website provides information on available services, publications, a list of symptoms, articles, and upcoming events. 

University of Washington's Fetal Alcohol and Drug Unit The Fetal Alcohol and Drug Unit is a research unit dedicated to the prevention, intervention, and treatment of FAS and Fetal Alcohol Effects (FAE). The Fetal Alcohol and Drug Unit website provides information on research projects and findings, a list of support groups worldwide, a list of international FAS/FAE conferences, and other national and international resources. 

Fragile X Syndrome 

FRAXA Research Foundation FRAXA is a nonprofit organization whose mission is to accelerate progress toward effective treatments and ultimately a cure for fragile X syndrome, by directly funding the most promising research. FRAXA also supports families affected by fragile X syndrome and raises awareness of this important but virtually unknown disease. The FRAXA Research Foundation website provides information on fragile X syndrome, the organization, current research, and how to get involved. 

National Fragile X Foundation (NFXF) The NFXF unites the fragile X syndrome community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for fragile X syndrome. The NFXF website provides information for the newly diagnosed, doctors and genetic counselors; descriptions of research; intervention materials; and other information and resources related to fragile X syndrome.

American Association of the Deaf-Blind (AADB) The AADB is a nonprofit, tax-exempt national consumer organization of, by and for deaf-blind Americans and their supporters. The AADB strives to ensure that all deaf-blind persons achieve their maximum potential through increased independence, productivity, and integration into the community. The AADB website provides information and resources related to the support service providers, technology, answers to frequently asked questions, upcoming national conferences, and publications. 

National Family Association for Deaf-Blind (NFADB) NFADB is a nonprofit, volunteer-based family association whose philosophy is that individuals who are deaf-blind are valued members of society and are entitled to the same opportunities and choices as other members of the community. The NFADB website provides information on the organization, resources and links, and state resources. 

National Consortium on Deaf-Blindness (NCDB) The NCDB is a national technical assistance and dissemination center for children and youth who are deaf-blind. The NCDB works collaboratively with families, as well as federal, state, and local agencies to provide technical assistance, information, and personnel training. 

Diabetes 

American Diabetes Association (ADA) The ADA strives to prevent and cure diabetes and to improve the lives of all people affected by diabetes by funding research, publishing scientific findings, and providing information and other services to people with diabetes, their families, health care professionals and the public. The ADA is also actively involved in advocating for scientific research and for the rights of people with diabetes. The ADA website provides information on diabetes basics, living with diabetes, food and fitness, and community efforts, as well as news and research. 

Juvenile Diabetes Research Foundation International (JRDF) The JDRF strives to find a cure for diabetes and its complications through the support of research. The JDRF website provides information on current research, information targeted specifically to scientists, a listing of locations, information about living with diabetes, publications, and advocacy information. 

Down Syndrome 

Association for Children with Down Syndrome (ACDS) ACDS is dedicated to providing lifetime resources of exceptional quality, innovation, and inclusion for individuals with Down syndrome and other developmental disabilities and their families. The ACDS website provides information on the organization, descriptions of available services, and listings of upcoming events. 

National Down Syndrome Society (NDSS) The NDSS strives to be the national advocate for the value, acceptance and inclusion of people with Down syndrome so that all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. The NDSS website provides information about down syndrome; education, development, and community life materials; health care information; and policy, research, and self-advocate information. 

National Down Syndrome Congress (NDSC) The NDSC provides information, advocacy, and support concerning all aspects of life for individuals with Down syndrome. The NDSC website provides information about the organization, current news and upcoming events, informational resources, legislative resources and methods to contact legislators, and information for self-advocates. 

Dysautonomia 

The National Dysautonomia Research Foundation (NDRF) The NDRF is a nonprofit foundation established to help those who are afflicted with any of the various forms of Dysautonomia. The NDRF website provides information on Dysautonomia, resources to help find a specialist, a discussion forum, and contact information for the organization. 

Dyslexia 

Dyslexia Research Institute, Inc. The Dyslexia Research Institute's goal is to change the perception of learning differences, specifically in the area of dyslexia and attention deficit disorders (ADD) and to help dyslexics and individuals with ADD become successful individuals using their talents and skills to enrich society. The Dyslexia Research Institute's website provides information on the organization, resources to help identify, a listing of available services, information about upcoming seminars and current research projects, and additional resources and materials. 

The International Dyslexia Association (IDA) The IDA is a nonprofit organization dedicated to helping individuals with dyslexia, their families, and the communities that support them. The IDA website provides information and resources related to dyslexia, tools to help find a provider, a listing of branches and global partners, information about upcoming conferences, and publications from the organization. 

Dystonia 

Dystonia Medical Research Foundation (DMRF) The DMRF is a nonprofit, tax-exempt organization dedicated to serving all people with dystonia and their families. The DMRF website provides information about dystonia, news and events related to dystonia, research related to dystonia, and information and resources to help individuals live with dystonia. 

Ectodermal Dysplasias

 National Foundation for Ectodermal Dysplasias (NFED) The NFED provides and supports education and research for people touched by ectodermal dysplasias. The NFED website provides information on news and events, information about ectodermal dysplasias, resources for support, descriptions, or research, and information about the organization. 

Ehlers-Danlos Syndrome 

Ehlers-Danlos National Foundation (EDNF) The EDNF provides emotional support and the latest information to those affected by Ehlers-Danlos syndrome (EDS). The EDNF website provides information about EDS, information for medical professionals, and current news. 

Epidermolysis Bullosa Dystrophic 

Dystrophic Epidermolysis Bullosa Research Association of America (Debra) Debra is a national nonprofit organization dedicated to both promoting research to find new treatments and a cure for epidermolysis bullosa (EB) and providing information and support for people with EB and their families. The Debra website provides information for understanding EB, information about the organization, details regarding available programs and services, a "family center" that provides information for families, and an online community called "Debra Nation." 

Epilepsy 

American Epilepsy Society (AES) AES promotes research and education for professionals dedicated to the prevention, treatment, and cure of epilepsy. The AES website provides information on the organization, educational information for professionals, a listing of upcoming meetings and events, and information on research and publications. 

Essential Tremor 

International Essential Tremor Foundation (IETF) IETF was created to provide information, services, and support to individuals and families affected by essential tremor (ET). The organization encourages and promotes research in an effort to determine the causes, treatment, and ultimately the cure for ET. The IETF website provides information for the newly diagnosed, research, community information, and additional resources. 

Exostoses 

The Multiple Hereditary Exostoses Coalition The MHE Coalition was formed to provide support and information to people living with multiple hereditary exostoses ("MHE") and to reach out to MHE-affected individuals and families throughout the world. This organization is dedicated to promoting and encouraging research to find the causes, treatments and ultimately the cure for this rare bone disease. 

Facioscapulohumeral Muscular Dystrophy 

Facioscapulohumeral (FSH) Society, Inc. The FSH Society addresses issues and needs related to Facioscapulohumeral muscular dystrophy. The FSH Society website provides information on the organization, information specifically targeted at patients and scientists, current research, links to community and reference, and news and events. 

Fatty Oxidation Disorder 

Fatty Oxidation Disorder (FOD) Family Support Group FOD Family Support Group is intended to be used as a resource for families, friends, doctors, researchers and others who would like to support, educate and provide a forum for the sharing of ideas and concerns for those whose lives have been touched by a fatty oxidation disorder. 

Fetal Alcohol Syndrome 

Pregnancy and Alcohol.org Pregnancy and Alcohol.org provides information on women, alcohol, and pregnancy. The website provides current information and resources, answers questions, and shares referral sources regarding issues related to women, alcohol, and pregnancy, including fetal alcohol spectrum disorders (FASD). 

National Organization on Fetal Alcohol Syndrome (NOFAS) NOFAS is dedicated to eliminating birth defects caused by alcohol consumption during pregnancy and improving the quality of life for those individuals and families affected. The NOFAS website provides information specifically targeted for educators, health care professionals, and expectant mothers, as well as advocacy information and information for living with FASD. 

Fetal Alcohol Syndrome (FAS) Family Resource Institute The FAS Family Resource Institute strives to identify, understand, and care for individuals disabled by prenatal alcohol exposure and their families, and to prevent future generations from having to live with this disability. The FAS Family Resource Institute website provides information on available services, publications, a list of symptoms, articles, and upcoming events. 

University of Washington's Fetal Alcohol and Drug Unit The Fetal Alcohol and Drug Unit is a research unit dedicated to the prevention, intervention, and treatment of FAS and Fetal Alcohol Effects (FAE). The Fetal Alcohol and Drug Unit website provides information on research projects and findings, a list of support groups worldwide, a list of international FAS/FAE conferences, and other national and international resources. 

Fragile X Syndrome 

FRAXA Research Foundation FRAXA is a nonprofit organization whose mission is to accelerate progress toward effective treatments and ultimately a cure for fragile X syndrome, by directly funding the most promising research. FRAXA also supports families affected by fragile X syndrome and raises awareness of this important but virtually unknown disease. The FRAXA Research Foundation website provides information on fragile X syndrome, the organization, current research, and how to get involved. 

National Fragile X Foundation (NFXF) The NFXF unites the fragile X syndrome community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward improved treatments and a cure for fragile X syndrome. The NFXF website provides information for the newly diagnosed, doctors and genetic counselors; descriptions of research; intervention materials; and other information and resources related to fragile X syndrome.

Galactosemia 

Parents of Galactosemic Children, Inc. (PGC) PGC is a national, nonprofit, volunteer organization whose mission is to provide information, support, and networking opportunities to families affected by galactosemia. The PGC website provides information on galactosemia, diet resources, and potential complications, as well as archived editions of the newsletter. 

Gastrointestinal Disorders 

The Oley Foundation The Oley Foundation is a national, independent, nonprofit organization that provides up-to-date information, outreach services, conference activities, and emotional support for homePEN consumers, their families, caregivers and professionals. The Oley Foundation website provides news and updates, information on conferences, and descriptions of related research. 

Gastrointestinal Reflux 

Pediatric Adolescent Gastroesophageal Reflux Association, Inc. (PAGER) PAGER is a nonprofit, tax-exempt, membership organization that provides information and support to parents, patients, and doctors about gastroesophageal reflux (GER). The PAGER website provides information on GER and patient-to-patient information including forums and blogs. 

Gaucher's Disease 

National Gaucher Foundation (NGF) NGF is a nonprofit organization that funds research, grants financial assistance, promotes education and awareness, supports legislation, and provides vital programs. Through the National Gaucher Care Foundation, the CARE Program and the Care+Plus Program, NGF extends critical financial assistance to individuals with Gaucher's disease. The NGF website provides information on treatments and prescriptions, news related to Gaucher’s disease, upcoming meetings and events, descriptions of programs, and current legislation. 

Genetic Disorders 

Genetic Alliance Genetic Alliance is a nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. The Genetic Alliance website provides information and resources about available programs and services, public policy information, publications, and upcoming events. 

The Major Aspects of Growth In Children (MAGIC) Foundation The MAGIC Foundation is a national, nonprofit organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child's growth. The MAGIC Foundation website provides information on the foundation, educational programs and conventions, and a Kid's Club section for children affected by genetic disorders. 

Velo-Cardio-Facial Syndrome Educational Foundation, Inc. (VCFS) The VCFS is an international, nonprofit organization dedicated to providing support and information to individuals who are affected by this syndrome, their families, physicians and other practitioners. The VCFS website provides information about the foundation, links to an international network, news and updates, and a tool for finding support groups.

Glaucoma 

Glaucoma Research Foundation (GRF) GRF is a national, nonprofit organization dedicated to protecting the sight and independence of people living with glaucoma through research and education, with the ultimate goal of curing glaucoma. GRF funds leading-edge research around the world, seeking new and better treatments for glaucoma in addition to a cure for this devastating disease, the leading cause of preventable blindness in America. The GRF website provides information about glaucoma, information for those living with glaucoma, and treatment options and research related to glaucoma. 

Gluten Intolerance

Gluten Intolerance Group (GIG) of North America The GIG of North America strives to increase awareness by providing current, accurate, information and education, as well as support, to persons with gluten intolerance diseases, such as celiac disease and dermatitis herpetiformis, their families, health care professionals and the general public. 

Group B Strep 

Group B Strep Association (GBSA) GBSA is a nonprofit organization that was formed by parents whose babies died from this devastating infection. The Group B Strep (GBS) Association's goals are to educate the public about GBS infections, promote prevention of neonatal GBS through routine prenatal screening, and promote the development of the GBS vaccine. The GBSA website provides information about the organization, current news related to GBS, educational materials, and links and additional resources. 

Growth Disorders 

Human Growth Foundation (HGF) HGF is a voluntary, nonprofit organization whose mission is to help children and adults with disorders of growth and growth hormone through research, education, support, and advocacy. The HGF website provides news, resources related to growth disorders, publications, descriptions of programs, and a listing of upcoming activities. 

The Major Aspects of Growth In Children (MAGIC) Foundation The MAGIC Foundation is a national, nonprofit organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child's growth. The MAGIC Foundation website provides information on the foundation, educational programs and conventions, and a Kid's Club section for children affected by genetic disorders. 

Guillian-Barre Syndrome 

Guillian-Barre Syndrome/Chronic Inflammatory Demyelinating Polyneuropathy (GBS/CIDP) Foundation International The GBS/CIDP Foundation International provides support and assistance to GBS/CIPD patients and their families and is committed to increasing knowledge and awareness in both the public and professional communities. The GBS/CIDP website provides information on GBS/CIDP, a forum, news and events, and information related to legislative actions.

Galactosemia 

Parents of Galactosemic Children, Inc. (PGC) PGC is a national, nonprofit, volunteer organization whose mission is to provide information, support, and networking opportunities to families affected by galactosemia. The PGC website provides information on galactosemia, diet resources, and potential complications, as well as archived editions of the newsletter. 

Gastrointestinal Disorders 

The Oley Foundation The Oley Foundation is a national, independent, nonprofit organization that provides up-to-date information, outreach services, conference activities, and emotional support for homePEN consumers, their families, caregivers and professionals. The Oley Foundation website provides news and updates, information on conferences, and descriptions of related research. 

Gastrointestinal Reflux 

Pediatric Adolescent Gastroesophageal Reflux Association, Inc. (PAGER) PAGER is a nonprofit, tax-exempt, membership organization that provides information and support to parents, patients, and doctors about gastroesophageal reflux (GER). The PAGER website provides information on GER and patient-to-patient information including forums and blogs. 

Gaucher's Disease 

National Gaucher Foundation (NGF) NGF is a nonprofit organization that funds research, grants financial assistance, promotes education and awareness, supports legislation, and provides vital programs. Through the National Gaucher Care Foundation, the CARE Program and the Care+Plus Program, NGF extends critical financial assistance to individuals with Gaucher's disease. The NGF website provides information on treatments and prescriptions, news related to Gaucher’s disease, upcoming meetings and events, descriptions of programs, and current legislation. 

Genetic Disorders 

Genetic Alliance Genetic Alliance is a nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. The Genetic Alliance website provides information and resources about available programs and services, public policy information, publications, and upcoming events. 

The Major Aspects of Growth In Children (MAGIC) Foundation The MAGIC Foundation is a national, nonprofit organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child's growth. The MAGIC Foundation website provides information on the foundation, educational programs and conventions, and a Kid's Club section for children affected by genetic disorders. 

Velo-Cardio-Facial Syndrome Educational Foundation, Inc. (VCFS) The VCFS is an international, nonprofit organization dedicated to providing support and information to individuals who are affected by this syndrome, their families, physicians and other practitioners. The VCFS website provides information about the foundation, links to an international network, news and updates, and a tool for finding support groups.

Glaucoma 

Glaucoma Research Foundation (GRF) GRF is a national, nonprofit organization dedicated to protecting the sight and independence of people living with glaucoma through research and education, with the ultimate goal of curing glaucoma. GRF funds leading-edge research around the world, seeking new and better treatments for glaucoma in addition to a cure for this devastating disease, the leading cause of preventable blindness in America. The GRF website provides information about glaucoma, information for those living with glaucoma, and treatment options and research related to glaucoma. 

Gluten Intolerance

Gluten Intolerance Group (GIG) of North America The GIG of North America strives to increase awareness by providing current, accurate, information and education, as well as support, to persons with gluten intolerance diseases, such as celiac disease and dermatitis herpetiformis, their families, health care professionals and the general public. 

Group B Strep 

Group B Strep Association (GBSA) GBSA is a nonprofit organization that was formed by parents whose babies died from this devastating infection. The Group B Strep (GBS) Association's goals are to educate the public about GBS infections, promote prevention of neonatal GBS through routine prenatal screening, and promote the development of the GBS vaccine. The GBSA website provides information about the organization, current news related to GBS, educational materials, and links and additional resources. 

Growth Disorders 

Human Growth Foundation (HGF) HGF is a voluntary, nonprofit organization whose mission is to help children and adults with disorders of growth and growth hormone through research, education, support, and advocacy. The HGF website provides news, resources related to growth disorders, publications, descriptions of programs, and a listing of upcoming activities. 

The Major Aspects of Growth In Children (MAGIC) Foundation The MAGIC Foundation is a national, nonprofit organization created to provide support services for the families of children afflicted with a wide variety of chronic and/or critical disorders, syndromes and diseases that affect a child's growth. The MAGIC Foundation website provides information on the foundation, educational programs and conventions, and a Kid's Club section for children affected by genetic disorders. 

Guillian-Barre Syndrome 

Guillian-Barre Syndrome/Chronic Inflammatory Demyelinating Polyneuropathy (GBS/CIDP) Foundation International The GBS/CIDP Foundation International provides support and assistance to GBS/CIPD patients and their families and is committed to increasing knowledge and awareness in both the public and professional communities. The GBS/CIDP website provides information on GBS/CIDP, a forum, news and events, and information related to legislative actions.

Hallervorden- Spatz Syndrome 

Neurodegeneration with Brain Iron Accumulation (NBIA) Disorders Association The NBIA Disorders Association was created to provide families, physicians and support providers with information about the inherited disease, NBIA. The NBIA Disorders Association website provides information about the organization, answers to frequently asked questions, family support materials, descriptions of research, and publications related to NBIA.

Hearing Impaired

Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) AG Bell is an international, membership organization and resource center for hearing loss, spoken language approaches, and related issues. The AG Bell website provides information on the organization, hearing loss resources, advocacy information, descriptions of programs and events, publications, and professional certification materials.

National Association for the Deaf (NAD) NAD is a nonprofit, tax-exempt organization that provides grassroots advocacy and empowerment, captioned media, certification of American Sign Language professionals, certification of sign language interpreters, deafness-related information and publications, legal assistance, policy development and research, public awareness, and youth leadership development.

Laurent Clerc National Deaf Education Center at Gallaudet University The Laurent Clerc National Deaf Education Center at Gallaudet University provides information, training and technical assistance for parents and professionals to meet the needs of children who are deaf or hard of hearing.

Disability Resources, Inc. Disability Resources, Inc. is a nonprofit, tax-exempt organization established to promote and improve awareness, availability, and accessibility of information that can help people with disabilities live, learn, love, work, and play independently. The Disability Resources website also includes a section dedicated to American Sign Language (ASL).

Heart Disorders

American Heart Association The American Heart Association supports research activities broadly related to cardiovascular function and disease, stroke, basic science, clinical trials, bioengineering/biotechnology, and public health problems.

Kids with Heart National Association for Children with Heart Disorders, Inc. Kids with Heart provides support, information, and education for the families of the children living with congenital heart defects and promotes public awareness of the issues that these families live with on a day to day basis.

Hemangioma

National Organization of Vascular Anomalies (NOVA) NOVA is a nonprofit, tax-exempt organization that serves as an educational resource to individuals affected by vascular anomalies. The NOVA website provides information about vascular anomalies, research related to vascular anomalies, and additional resources. 

Hemiplegia

Alternating Hemiplegia of Childhood Foundation (AHCF) AHCF is a nonprofit, tax-exempt, charitable organization that promotes research into the causes of AHC; funds research into new treatments of, and ultimately a cure for, AHC; promotes proper diagnosis; educates health care professionals, the public, and related organization; supports the membership of the AHCF; provides support to families and children with AHC; develops an international support organization consisting of people and organizations who care about children with AHC; encourages the exchange of information worldwide; and raises funds in support of these goals.

Children's Hemiplegia and Stoke Association (CHASA) CHASA is a nonprofit organization that offers support and information to families of infants, children and young adults who have hemiplegic cerebral palsy, hemiplegia, hemiparesis, prenatal stroke, childhood stroke, infant stroke, perinatal stroke, neonatal stroke, in utero stroke, or stroke in neonates.

Hemophilia

National Hemophilia Foundation (NHF) NHF is dedicated to finding better treatments and cures for bleeding and clotting disorders, and preventing the complications of these disorders through education, advocacy, and research. The NHF website provides information about coagulation disorders, blood and product safety, resources for advocacy, information for researchers and health care providers, information about educational conferences, news, descriptions of programs, and information specifically targeted to women.

Hemorrhagic Telangiectasia/ Osler-Weber-Rendu Syndrome

Hereditary Hemorrhagic Telangiectasia (HHT) Foundation International, Inc. The HHT Foundation International is a worldwide, nonprofit organization whose purpose is to support patients and families and educate medical professionals. The HHT International Foundation website provides information on the organization, information related to HHT, resources for living with HHT, information for medical/scientific professionals, a discussion forum, and additional resources.

Hermansky-Pudlak Syndrome

Hermansky-Pudlak Syndrome (HPS) Network, Inc. The HPS Network is a nonprofit support group for people and families dealing with HPS and related disorders such as Chediak Higashi syndrome.  The HPS Network gathers and disseminates information, promotes awareness and research, and provides support to its members. The HPS Network website provides information on HPS, information about the network, and a listing of upcoming conferences.

Hermaphoroditism

Intersex Society of North America (ISNA) The ISNA is an organization devoted to systemic change to end shame, secrecy, and unwanted genital surgeries for people born with an anatomy that someone decided is not standard for male or female. The ISNA website provides answers to frequently asked questions, information on related laws, related publications, and links to support groups.

Hernial Diaphragmatic

Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support (CHERUBS) CHERUBS is a Congenital Diaphragmatic Hernia (CDH) nonprofit organization founded to help families and medical care providers of children born with CDH. The CHERUBS website provides information on the organization, descriptions of the available services, information on latest projects, and links to social networking opportunities for those affected by CDH.

Histiocytosis

Histiocytosis Association of America (HAA) HAA is a nonprofit organization designed to promote scientific research, provide solutions to some of the problems which are specific to patients suffering from this disease and to offer support to such patients and their families and to educate and promote education related to the histiocytoses. The HAA website provides information on the disease, recommendations for getting involved, a listing of upcoming events and special events, a link to the Histiocyte Society, and a message board to connect with other families.

Holoprosencephaly

The Carter Centers for Brain Research The Carter Centers for Brain Research in Holoprosencephaly and Related Malformations is a worldwide network of scientists, health care professionals, and families dedicated to research, education, and practice. The Carter Centers for Brain Research website provides information about holoprosencephaly, links to support and resources, descriptions of research, and information on how to refer a patient.

Hydranencephaly

Rays of Sunshine Ray of Sunshine is a comprehensive, parent-driven source of information and support on the Internet available for those who care for individuals with hydranencephaly.

Hydrocephalus

Hydrocephalus Association (HA) The HA strives to provide support, education, and advocacy for individuals, families, and professionals to ensure that families and individuals dealing with the complex issues of hydrocephalus receive personal support, comprehensive educational materials, and ongoing quality health care. The HA website provides information on education and support, research, and information about HA advocacy.

National Hydrocephalus Foundation (NHF) The NHF is a voluntary, nonprofit, tax-exempt, public service organization that assembles and disseminates information pertaining to hydrocephalus, such as its treatments and outcomes; establishes and facilitates a communication network among affected families and individuals; helps others gain a deeper understanding of those areas affected by hydrocephalus, such as education, insurance, tax and estate planning, employment and family; increases public awareness and knowledge of hydrocephalus; and promotes and supports research on the causes, treatment and prevention of hydrocephalus.

Hyperlexia

Hyperlexia.net Hperlexia.net is a nonprofit organization comprised of parents and relatives of children with hyperlexia, speech, and language professionals, education professionals, and other concerned individuals with the common goal of identifying hyperlexia, promoting and facilitating effective teaching techniques both at home and at school, and educating the general public as to the existence of the hyperlexia.

Hypoparathyroidism

National Graves' Disease Foundation (GDF) The GDF is a tax-exempt, nonprofit, international charitable organization that has helped thousands of patients better understand the symptoms and treatment programs for Graves' disease. The GDF website provides information about the organization, information about Graves' disease, a listing of upcoming conferences, and links to publications related to Graves' disease.

Ichthyosis

Foundation for Ichthyosis & Related Skin Types (FIRST) FIRST is a nonprofit, tax-exempt organization devoted to helping individuals and families with the genetic diseases collectively called the ichthyoses. The FIRST website provides information about ichthyoses, information about the organization, news and events, related research and support, and information speficially targeted at medical professionals.

Immune Disorders

Immune Deficiency Foundation (IDF) IDF is a nonprofit, tax-exempt organization that provides accurate and timely information for Americans who have been diagnosed with a primary immunodeficiency disease. The IDF website provides information about the disorders and the foundation, links to related publications and resources, and information specifically targeted at patients, families, and health care professionals.

Incontinence

National Association for Continence (NAFC) The NAFC is a national, private, nonprofit, tax-exempt organization dedicated to improving the quality of life of people with incontinence, voiding dysfunction, and related pelvic floor disorders. The NAFC website provides information on the organization, facts about bladder and bowel health, and information specifically targeted at health care providers. 

Intestinal Pseudo-Obstruction Syndrome

International Foundation for Functional Gastrointestinal (GI) Disorders (IFFGD) The IFFGD is a nonprofit, tax-exempt, education and research organization dedicated to informing, assisting and supporting people affected by GI disorders. The IFFGD website provides information on the organization, information on GI disorders, a library of resources, advocacy materials, news and events, and links to support.

Joubert Syndrome

Joubert Syndrome Foundation and Related Cerebellar Disorders The Joubert Syndrome Foundation and Related Cerebellar Disorders is an international network of parents who share knowledge, experience, and emotional support. The foundation offers a networking list, newsletter, and a biennial conference.

Hallervorden- Spatz Syndrome 

Neurodegeneration with Brain Iron Accumulation (NBIA) Disorders Association The NBIA Disorders Association was created to provide families, physicians and support providers with information about the inherited disease, NBIA. The NBIA Disorders Association website provides information about the organization, answers to frequently asked questions, family support materials, descriptions of research, and publications related to NBIA.

Hearing Impaired

Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) AG Bell is an international, membership organization and resource center for hearing loss, spoken language approaches, and related issues. The AG Bell website provides information on the organization, hearing loss resources, advocacy information, descriptions of programs and events, publications, and professional certification materials.

National Association for the Deaf (NAD) NAD is a nonprofit, tax-exempt organization that provides grassroots advocacy and empowerment, captioned media, certification of American Sign Language professionals, certification of sign language interpreters, deafness-related information and publications, legal assistance, policy development and research, public awareness, and youth leadership development.

Laurent Clerc National Deaf Education Center at Gallaudet University The Laurent Clerc National Deaf Education Center at Gallaudet University provides information, training and technical assistance for parents and professionals to meet the needs of children who are deaf or hard of hearing.

Disability Resources, Inc. Disability Resources, Inc. is a nonprofit, tax-exempt organization established to promote and improve awareness, availability, and accessibility of information that can help people with disabilities live, learn, love, work, and play independently. The Disability Resources website also includes a section dedicated to American Sign Language (ASL).

Heart Disorders

American Heart Association The American Heart Association supports research activities broadly related to cardiovascular function and disease, stroke, basic science, clinical trials, bioengineering/biotechnology, and public health problems.

Kids with Heart National Association for Children with Heart Disorders, Inc. Kids with Heart provides support, information, and education for the families of the children living with congenital heart defects and promotes public awareness of the issues that these families live with on a day to day basis.

Hemangioma

National Organization of Vascular Anomalies (NOVA) NOVA is a nonprofit, tax-exempt organization that serves as an educational resource to individuals affected by vascular anomalies. The NOVA website provides information about vascular anomalies, research related to vascular anomalies, and additional resources. 

Hemiplegia

Alternating Hemiplegia of Childhood Foundation (AHCF) AHCF is a nonprofit, tax-exempt, charitable organization that promotes research into the causes of AHC; funds research into new treatments of, and ultimately a cure for, AHC; promotes proper diagnosis; educates health care professionals, the public, and related organization; supports the membership of the AHCF; provides support to families and children with AHC; develops an international support organization consisting of people and organizations who care about children with AHC; encourages the exchange of information worldwide; and raises funds in support of these goals.

Children's Hemiplegia and Stoke Association (CHASA) CHASA is a nonprofit organization that offers support and information to families of infants, children and young adults who have hemiplegic cerebral palsy, hemiplegia, hemiparesis, prenatal stroke, childhood stroke, infant stroke, perinatal stroke, neonatal stroke, in utero stroke, or stroke in neonates.

Hemophilia

National Hemophilia Foundation (NHF) NHF is dedicated to finding better treatments and cures for bleeding and clotting disorders, and preventing the complications of these disorders through education, advocacy, and research. The NHF website provides information about coagulation disorders, blood and product safety, resources for advocacy, information for researchers and health care providers, information about educational conferences, news, descriptions of programs, and information specifically targeted to women.

Hemorrhagic Telangiectasia/ Osler-Weber-Rendu Syndrome

Hereditary Hemorrhagic Telangiectasia (HHT) Foundation International, Inc. The HHT Foundation International is a worldwide, nonprofit organization whose purpose is to support patients and families and educate medical professionals. The HHT International Foundation website provides information on the organization, information related to HHT, resources for living with HHT, information for medical/scientific professionals, a discussion forum, and additional resources.

Hermansky-Pudlak Syndrome

Hermansky-Pudlak Syndrome (HPS) Network, Inc. The HPS Network is a nonprofit support group for people and families dealing with HPS and related disorders such as Chediak Higashi syndrome.  The HPS Network gathers and disseminates information, promotes awareness and research, and provides support to its members. The HPS Network website provides information on HPS, information about the network, and a listing of upcoming conferences.

Hermaphoroditism

Intersex Society of North America (ISNA) The ISNA is an organization devoted to systemic change to end shame, secrecy, and unwanted genital surgeries for people born with an anatomy that someone decided is not standard for male or female. The ISNA website provides answers to frequently asked questions, information on related laws, related publications, and links to support groups.

Hernial Diaphragmatic

Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support (CHERUBS) CHERUBS is a Congenital Diaphragmatic Hernia (CDH) nonprofit organization founded to help families and medical care providers of children born with CDH. The CHERUBS website provides information on the organization, descriptions of the available services, information on latest projects, and links to social networking opportunities for those affected by CDH.

Histiocytosis

Histiocytosis Association of America (HAA) HAA is a nonprofit organization designed to promote scientific research, provide solutions to some of the problems which are specific to patients suffering from this disease and to offer support to such patients and their families and to educate and promote education related to the histiocytoses. The HAA website provides information on the disease, recommendations for getting involved, a listing of upcoming events and special events, a link to the Histiocyte Society, and a message board to connect with other families.

Holoprosencephaly

The Carter Centers for Brain Research The Carter Centers for Brain Research in Holoprosencephaly and Related Malformations is a worldwide network of scientists, health care professionals, and families dedicated to research, education, and practice. The Carter Centers for Brain Research website provides information about holoprosencephaly, links to support and resources, descriptions of research, and information on how to refer a patient.

Hydranencephaly

Rays of Sunshine Ray of Sunshine is a comprehensive, parent-driven source of information and support on the Internet available for those who care for individuals with hydranencephaly.

Hydrocephalus

Hydrocephalus Association (HA) The HA strives to provide support, education, and advocacy for individuals, families, and professionals to ensure that families and individuals dealing with the complex issues of hydrocephalus receive personal support, comprehensive educational materials, and ongoing quality health care. The HA website provides information on education and support, research, and information about HA advocacy.

National Hydrocephalus Foundation (NHF) The NHF is a voluntary, nonprofit, tax-exempt, public service organization that assembles and disseminates information pertaining to hydrocephalus, such as its treatments and outcomes; establishes and facilitates a communication network among affected families and individuals; helps others gain a deeper understanding of those areas affected by hydrocephalus, such as education, insurance, tax and estate planning, employment and family; increases public awareness and knowledge of hydrocephalus; and promotes and supports research on the causes, treatment and prevention of hydrocephalus.

Hyperlexia

Hyperlexia.net Hperlexia.net is a nonprofit organization comprised of parents and relatives of children with hyperlexia, speech, and language professionals, education professionals, and other concerned individuals with the common goal of identifying hyperlexia, promoting and facilitating effective teaching techniques both at home and at school, and educating the general public as to the existence of the hyperlexia.

Hypoparathyroidism

National Graves' Disease Foundation (GDF) The GDF is a tax-exempt, nonprofit, international charitable organization that has helped thousands of patients better understand the symptoms and treatment programs for Graves' disease. The GDF website provides information about the organization, information about Graves' disease, a listing of upcoming conferences, and links to publications related to Graves' disease.

Ichthyosis

Foundation for Ichthyosis & Related Skin Types (FIRST) FIRST is a nonprofit, tax-exempt organization devoted to helping individuals and families with the genetic diseases collectively called the ichthyoses. The FIRST website provides information about ichthyoses, information about the organization, news and events, related research and support, and information speficially targeted at medical professionals.

Immune Disorders

Immune Deficiency Foundation (IDF) IDF is a nonprofit, tax-exempt organization that provides accurate and timely information for Americans who have been diagnosed with a primary immunodeficiency disease. The IDF website provides information about the disorders and the foundation, links to related publications and resources, and information specifically targeted at patients, families, and health care professionals.

Incontinence

National Association for Continence (NAFC) The NAFC is a national, private, nonprofit, tax-exempt organization dedicated to improving the quality of life of people with incontinence, voiding dysfunction, and related pelvic floor disorders. The NAFC website provides information on the organization, facts about bladder and bowel health, and information specifically targeted at health care providers. 

Intestinal Pseudo-Obstruction Syndrome

International Foundation for Functional Gastrointestinal (GI) Disorders (IFFGD) The IFFGD is a nonprofit, tax-exempt, education and research organization dedicated to informing, assisting and supporting people affected by GI disorders. The IFFGD website provides information on the organization, information on GI disorders, a library of resources, advocacy materials, news and events, and links to support.

Joubert Syndrome

Joubert Syndrome Foundation and Related Cerebellar Disorders The Joubert Syndrome Foundation and Related Cerebellar Disorders is an international network of parents who share knowledge, experience, and emotional support. The foundation offers a networking list, newsletter, and a biennial conference.

Kidney Disorders

American Association of Kidney Patients (AAKP) The AAKP is a nonprofit, tax-exempt organization that exists to serve the needs, interests and welfare of all kidney patients and their families. The association's mission is to improve the lives of fellow kidney patients and their families by helping them deal with the physical, emotional, and social impact of kidney disease.

National Kidney Foundation, Inc. (NKF) The NKF is a major voluntary health organization that seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. The NKF website provides information specifically targeted at patients and professionals, information about transplantation, and news and upcoming events. 

Polycystic Kidney Disease (PKD) Research Foundation PKD Research Foundation is a nonprofit, tax-exempt organization that is devoted to determining the cause, improving clinical treatment, and discovering a cure for PKD.  The PKD Research Foundation website provides information on PKD, descriptions of current research, a listing of upcoming events, and news. 

Kinsborne's Syndrome

National Pediatric Myoclonus Center (NPMC) The National Pediatric Myoclonus Center provides the best care possible for patients whose myoclonus began during childhood. The National Pediatric Myoclonus Center website provides information on opsoclonus-myoclonus syndrome, answers to frequently asked questions, upcoming conferences, fact sheets, information for parents, links to related research and references, and links to grants and financial assistance.

Klinefelter Syndrome

Klinefelter Syndrome Association, Inc. (KSA) KSA is designed to provide support and education for families and professionals dealing with the following genetic conditions: Sex chromosome variations 47XXY, 48XXYY, 48XXXY, 49XXXXY, 46XY/47XXY mosaic, and other sex chromosome variants. The KSA website provides information about the organization, resources, a listing of upcoming conferences, links to support, and online discussion groups.

Klippel-Trenaunay Syndrome

Klippel-Trenaunay Syndrome (K-T) Support Group K-T Support Group provides information and support to families about Klippel-Trenaunay syndrome, a combined vascular malformation. The K-T Support Group website provides links and resources regarding K-T syndrome.

Latex Allergy

Latex Allergy Information Services Latex Allergy Information Services is a comprehensive, up-to-date listing of latex allergy-related sites and documents. The Latex Allergy Information Services website provides articles and practical information about latex allergy, a message board, and a guestbook.

Learning Disabilities

Learning Disabilities Association of America (LDA) LDA is the nonprofit volunteer organization that advocates for individuals with learning disabilities with over 200 state and local affiliates in forty-two states and Puerto Rico, and membership of over 15,000 members from twenty-seven countries around the world. The LDA website provides information about the organization, state chapter contact information, links to learning disability research, a calendar of upcoming events, and learning disability information specifically targeted at parents, teachers, adults, and professionals. 

National Center for Learning Disabilities (NCLD) NCLD provides essential information to parents, professionals and individuals with learning disabilities, promotes research and programs to foster effective learning, and advocates for policies to protect and strengthen educational rights and opportunities. The NCLD website provides information on learning disabilities, information for the home, information for schools, and information for college and work environments. 

Leptomeningeal Angiomatosis 

Lesch-Nylan Registry The Lesch-Nylan Registry provides information about genetic counseling and support groups for  individuals and families with genetic conditions or birth defects, genetic counselors, clinical geneticists, and medical geneticists. 

Leukemia 

Leukemia & Lymphoma Society (LLS) LLS is a voluntary health organization dedicated to funding blood cancer research, education, and patient services. The mission of LLS is to cure leukemia, lymphoma, Hodgkin's disease, and myeloma, and to improve the quality of life of patients and their families. The LLS website provides information about patient services, the disease, how to help, and advocacy. 

Leukodystrophy 

United Leukodystrophy Foundation (ULF) The ULF is a nonprofit, tax-exempt organization dedicated to helping children and adults who have Leukodystrophy and assisting the family members, professionals, and support services that serve them. The ULF is committed to the identification, treatment, and cure of all leukodystrophies through programs of education, advocacy, research, and service. The ULF website provides a news bulletin, information for patients and family, links to resources, answers to frequently asked questions, and descriptions of programs and events. 

Lissencephaly 

National Institute of Neurological Disorders and Stroke (NINDS) Lissencephaly Information Page The NINDS Lissencephaly Information Page provides answers to frequently asked questions related to Lissencephaly, descriptions of research being done, descriptions of current clinical trials, and a listing of organizations that can provide support. 

Liver Disease 

American Liver Foundation (ALF) ALF is a nonprofit organization dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education, and advocacy. The ALF website information on liver health and disease prevention, descriptions of research awards, links to support services, information about advocacy, and a listing of upcoming events. 

Long Q-T Syndrome 

Cardiac Arrhythmias Research & Education (CARE) Foundation Inc. The CARE Foundation provides funding for research and increases professional and public awareness of unexpected sudden cardiac death due to acquired heart disease and inherited rhythm disorders. The CARE Foundation website provides information about the organization, information directly targeted at patients and professionals, a listing of medications to avoid, and descriptions of related research. 

Sudden Arrhythmia Death Syndromes (SADS) Foundation The SADS Foundation strives to save the lives and support the families of children and young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities. The SADS Foundation website provides information on the organization, news and events, information on living with SADS, awareness materials, information for patients and families, research and advocacy information, and medical professional education. 

Lowe Syndrome 

Lowe Syndrome Association (LSA) The LSA is an international, voluntary, nonprofit organization made up of parents, friends, professionals and others who are interested in Lowe syndrome, a rare genetic condition that affects boys. The LSA website provides information on the organization, information about Lowe Syndrome, upcoming conferences, descriptions of related research, and news. 

Lung Diseases 

American Lung Association The American Lung Association fights lung disease in all its forms, with special emphasis on asthma, tobacco control, and environmental health. The American Lung Association website provides information on the organization, related publications, treatment options, and news. 

Lupus Erthematosis 

Lupus Foundation of America (LFA) The LFA is a national, nonprofit, voluntary health organization dedicated to finding the causes of and cure for lupus and providing support, services, and hope to all people affected by lupus. The LFA website provides information about lupus, descriptions of current research, resources related to Lupus, and information specifically targeted to health professionals. 

SLE Lupus Foundation Inc. The SLE Lupus Foundation is a nonprofit organization that provides direct patient services, education, public awareness, and funding for novel lupus research on the national level. The SLE Lupus Foundation website provides information on the organization, descriptions of available programs, information about lupus, related news, and information on current Lupus research. 

Lyme Disease 

American Lyme Disease Foundation, Inc. (ALDF) The ALDF is dedicated to the prevention, diagnosis, and treatment of Lyme disease and other tick-borne infections. The ALDF plays a key role in providing reliable and scientifically accurate information to the public, medical community, and government agencies about tick-borne diseases and their effects on human health and quality of life. The ALDF website provides information on the organization, a description of programs and services, answers to frequently asked questions, and descriptions of prevention products and programs. 

Lyme Disease Foundation, Inc. (LDF) LDF is a nonprofit, medical health care agency dedicated to finding solutions to tick-borne disorders. The LDF website provides information on the organization, information on diseases, scientific and community education materials, and resources. 

Lymphangioma 

AboutFace International AboutFace provides information and support to individuals with facial differences and their families. The AboutFace website provides information on the organization, a description of the programs and services, and a newsroom. 

Lymphedema 

National Lymphedema Network (NLN) The NLN is a nonprofit organization that provides education and guidance to lymphedema patients, health care professionals, and the general public by disseminating information on the prevention and management of primary and secondary lymphedema. The NLN website provides information on the organization, answers to frequently asked questions, information for patients and professionals, a newsletter, and resources to help find treatment. 

Kidney Disorders

American Association of Kidney Patients (AAKP) The AAKP is a nonprofit, tax-exempt organization that exists to serve the needs, interests and welfare of all kidney patients and their families. The association's mission is to improve the lives of fellow kidney patients and their families by helping them deal with the physical, emotional, and social impact of kidney disease.

National Kidney Foundation, Inc. (NKF) The NKF is a major voluntary health organization that seeks to prevent kidney and urinary tract diseases, improve the health and well-being of individuals and families affected by these diseases, and increase the availability of all organs for transplantation. The NKF website provides information specifically targeted at patients and professionals, information about transplantation, and news and upcoming events. 

Polycystic Kidney Disease (PKD) Research Foundation PKD Research Foundation is a nonprofit, tax-exempt organization that is devoted to determining the cause, improving clinical treatment, and discovering a cure for PKD.  The PKD Research Foundation website provides information on PKD, descriptions of current research, a listing of upcoming events, and news. 

Kinsborne's Syndrome

National Pediatric Myoclonus Center (NPMC) The National Pediatric Myoclonus Center provides the best care possible for patients whose myoclonus began during childhood. The National Pediatric Myoclonus Center website provides information on opsoclonus-myoclonus syndrome, answers to frequently asked questions, upcoming conferences, fact sheets, information for parents, links to related research and references, and links to grants and financial assistance.

Klinefelter Syndrome

Klinefelter Syndrome Association, Inc. (KSA) KSA is designed to provide support and education for families and professionals dealing with the following genetic conditions: Sex chromosome variations 47XXY, 48XXYY, 48XXXY, 49XXXXY, 46XY/47XXY mosaic, and other sex chromosome variants. The KSA website provides information about the organization, resources, a listing of upcoming conferences, links to support, and online discussion groups.

Klippel-Trenaunay Syndrome

Klippel-Trenaunay Syndrome (K-T) Support Group K-T Support Group provides information and support to families about Klippel-Trenaunay syndrome, a combined vascular malformation. The K-T Support Group website provides links and resources regarding K-T syndrome.

Latex Allergy

Latex Allergy Information Services Latex Allergy Information Services is a comprehensive, up-to-date listing of latex allergy-related sites and documents. The Latex Allergy Information Services website provides articles and practical information about latex allergy, a message board, and a guestbook.

Learning Disabilities

Learning Disabilities Association of America (LDA) LDA is the nonprofit volunteer organization that advocates for individuals with learning disabilities with over 200 state and local affiliates in forty-two states and Puerto Rico, and membership of over 15,000 members from twenty-seven countries around the world. The LDA website provides information about the organization, state chapter contact information, links to learning disability research, a calendar of upcoming events, and learning disability information specifically targeted at parents, teachers, adults, and professionals. 

National Center for Learning Disabilities (NCLD) NCLD provides essential information to parents, professionals and individuals with learning disabilities, promotes research and programs to foster effective learning, and advocates for policies to protect and strengthen educational rights and opportunities. The NCLD website provides information on learning disabilities, information for the home, information for schools, and information for college and work environments. 

Leptomeningeal Angiomatosis 

Lesch-Nylan Registry The Lesch-Nylan Registry provides information about genetic counseling and support groups for  individuals and families with genetic conditions or birth defects, genetic counselors, clinical geneticists, and medical geneticists. 

Leukemia 

Leukemia & Lymphoma Society (LLS) LLS is a voluntary health organization dedicated to funding blood cancer research, education, and patient services. The mission of LLS is to cure leukemia, lymphoma, Hodgkin's disease, and myeloma, and to improve the quality of life of patients and their families. The LLS website provides information about patient services, the disease, how to help, and advocacy. 

Leukodystrophy 

United Leukodystrophy Foundation (ULF) The ULF is a nonprofit, tax-exempt organization dedicated to helping children and adults who have Leukodystrophy and assisting the family members, professionals, and support services that serve them. The ULF is committed to the identification, treatment, and cure of all leukodystrophies through programs of education, advocacy, research, and service. The ULF website provides a news bulletin, information for patients and family, links to resources, answers to frequently asked questions, and descriptions of programs and events. 

Lissencephaly 

National Institute of Neurological Disorders and Stroke (NINDS) Lissencephaly Information Page The NINDS Lissencephaly Information Page provides answers to frequently asked questions related to Lissencephaly, descriptions of research being done, descriptions of current clinical trials, and a listing of organizations that can provide support. 

Liver Disease 

American Liver Foundation (ALF) ALF is a nonprofit organization dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education, and advocacy. The ALF website information on liver health and disease prevention, descriptions of research awards, links to support services, information about advocacy, and a listing of upcoming events. 

Long Q-T Syndrome 

Cardiac Arrhythmias Research & Education (CARE) Foundation Inc. The CARE Foundation provides funding for research and increases professional and public awareness of unexpected sudden cardiac death due to acquired heart disease and inherited rhythm disorders. The CARE Foundation website provides information about the organization, information directly targeted at patients and professionals, a listing of medications to avoid, and descriptions of related research. 

Sudden Arrhythmia Death Syndromes (SADS) Foundation The SADS Foundation strives to save the lives and support the families of children and young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities. The SADS Foundation website provides information on the organization, news and events, information on living with SADS, awareness materials, information for patients and families, research and advocacy information, and medical professional education. 

Lowe Syndrome 

Lowe Syndrome Association (LSA) The LSA is an international, voluntary, nonprofit organization made up of parents, friends, professionals and others who are interested in Lowe syndrome, a rare genetic condition that affects boys. The LSA website provides information on the organization, information about Lowe Syndrome, upcoming conferences, descriptions of related research, and news. 

Lung Diseases 

American Lung Association The American Lung Association fights lung disease in all its forms, with special emphasis on asthma, tobacco control, and environmental health. The American Lung Association website provides information on the organization, related publications, treatment options, and news. 

Lupus Erthematosis 

Lupus Foundation of America (LFA) The LFA is a national, nonprofit, voluntary health organization dedicated to finding the causes of and cure for lupus and providing support, services, and hope to all people affected by lupus. The LFA website provides information about lupus, descriptions of current research, resources related to Lupus, and information specifically targeted to health professionals. 

SLE Lupus Foundation Inc. The SLE Lupus Foundation is a nonprofit organization that provides direct patient services, education, public awareness, and funding for novel lupus research on the national level. The SLE Lupus Foundation website provides information on the organization, descriptions of available programs, information about lupus, related news, and information on current Lupus research. 

Lyme Disease 

American Lyme Disease Foundation, Inc. (ALDF) The ALDF is dedicated to the prevention, diagnosis, and treatment of Lyme disease and other tick-borne infections. The ALDF plays a key role in providing reliable and scientifically accurate information to the public, medical community, and government agencies about tick-borne diseases and their effects on human health and quality of life. The ALDF website provides information on the organization, a description of programs and services, answers to frequently asked questions, and descriptions of prevention products and programs. 

Lyme Disease Foundation, Inc. (LDF) LDF is a nonprofit, medical health care agency dedicated to finding solutions to tick-borne disorders. The LDF website provides information on the organization, information on diseases, scientific and community education materials, and resources. 

Lymphangioma 

AboutFace International AboutFace provides information and support to individuals with facial differences and their families. The AboutFace website provides information on the organization, a description of the programs and services, and a newsroom. 

Lymphedema 

National Lymphedema Network (NLN) The NLN is a nonprofit organization that provides education and guidance to lymphedema patients, health care professionals, and the general public by disseminating information on the prevention and management of primary and secondary lymphedema. The NLN website provides information on the organization, answers to frequently asked questions, information for patients and professionals, a newsletter, and resources to help find treatment. 

Macular Diseases 

Association for Macular Diseases, Inc. The Association for Macular Diseases is a nonprofit corporation designed to promote education and research for Macular Degeneration which is a general term used to describe a number of diseases of the retina. The Association for Macular Diseases website provides information on the organization, an encyclopedia, and news. 

Macular Degeneration Foundation The Macular Degeneration Foundation is a nonprofit, tax-exempt organization dedicated to serving the interests of those affected by macular degeneration and related low vision conditions. The Macular Degeneration Foundation website provides information about the organization, information on macular degeneration, news, and additional resources. 

Macular Degeneration International (MDI) MDI offers information and support through personal contact, over the telephone, via correspondence, on the Internet, and at a variety of seminars and national conferences. MDI, with help from its Scientific Advisory Board, also participates in research through a medical research fund and helps to facilitate research programs by recruiting patients and families for major studies. 

Malignant Hyperthermia 

Malignant Hyperthermia Association of the United States (MHAUS) The MHAUS is dedicated to the control of malignant hyperthermia (MH). The MHAUS website provides information specifically targeted at patients and information tailored to medical professionals. 

Maple Syrup Urine Disease 

Maple Syrup Urine Disease (MSUD) Family Support Group The MSUD Family Support Group is a nonprofit, tax-exempt organization for those with MSUD and their families and includes health-care professionals and others interested in MSUD. The MSUD Family Support Group website provides an overview of the organization, newsletters, featured information, and contact information for the organization. 

Marfan Syndrome 

National Marfan Foundation (NMF) The NMF is a voluntary organization that disseminates accurate and timely information about the condition to patients, family members, and the health care community; provides a network of communication for patients and relatives to share experiences, support one another, and improve their medical care; and supports and fosters research. The NMF website provides information about Marfan syndrome, living with the syndrome, and related disorders, as well as offers links to current research and advocacy related to the syndrome. 

Mast Cell Disease Systematic 

The Mastocytosis Society, Inc. (TMS) TMS is a nonprofit organization dedicated to helping patients, caregivers, and medical personnel understand mast cell disorders and the impact they have on patients' lives. The TMS website provides information on anaphylaxis, a calendar of upcoming events and conferences, news, descriptions of research, and links to support groups. 

Mental Illness 

National Alliance For The Mentally Ill (NAMI) NAMI is a nonprofit, grassroots, self-help, support and advocacy organization of consumers, families, and friends of people with severe mental illnesses, such as schizophrenia, major depression, bipolar disorder, obsessive-compulsive disorder, and anxiety disorders. The NAMI website provides information on mental illnesses, information on medications, links to support and programs, and contact information for the local NAMI. 

Substance Abuse and Mental Health Services Administration (SAMHSA) National Mental Health Information Center The SAMHSA National Mental Health Information Center provides information about mental health via a toll-free telephone number 1-800-789-2647, the SAMHSA website, and more than 600 publications. The center was developed for users of mental health services and their families, the general public, policy makers, providers, and the media. 

Mental Retardation 

American Association on Intellectual and Developmental Disabilities (AAIDD) The AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities. The AAIDD website provides information on the organization, information on conferences and training opportunities, links to publications, a listing of national resources, and links to AAIDD online communities. 

People First International People First and the self-advocacy movement have grown into an international movement in forty-three countries, with an estimated 17,000 members. 

The ARC of the United States The ARC of the United States advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. Together with their network of members and affiliated chapters, they improve systems of support and services, connect families, inspire communities, and influence public policy. 

Microcephaly 

FACES: The National Craniofacial Association FACES: The National Craniofacial Association is a nonprofit organization serving children and adults throughout the United States with severe craniofacial deformities resulting from birth defects, injuries, or disease. The FACES website provides information and resources on twenty-eight specific craniofacial disorders, networking resources for families, resource files of specialized craniofacial centers, financial aid information, and links to quarterly newsletters. 

Genetic Alliance Genetic Alliance is a nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. The Genetic Alliance website provides information and resources on available programs and services, information on public policy, a library of publications, and an events calendar. 

March of Dimes Birth Defects and Genetic Conditions March of Dimes is the leading nonprofit organization for pregnancy and baby health.  March of Dimes Birth Defects and Genetic Conditions website provides information on a variety of birth defects and genetics and has comprehensive coverage for pregnancy through caring for a newborn. 

Mitochondrial Disease 

United Mitochondrial Disease Foundation (UMDF) The UMDF promotes research and education for the diagnosis, treatment and cure of mitochondrial disorders and provides support to affected individuals and families. The UMDF website provides information on the organization, information on mitochondrial disease, and additional resources. 

MPS Disorders 

National Mucopolysaccharidoses (MPS) Society The National MPS Society supports research, supports families, and works to increase public and professional awareness. The National MPS Society website provides information on treatment and therapy options, education materials, support for individuals with MPS, a listing of upcoming events, news, and information on the society. 

Multiple Sclerosis 

National Multiple Sclerosis (MS) Society The National Multiple Sclerosis Society and its national network of chapters promote research, educate, and advocate for critical issues, as well as organize a wide range of programs including support for the newly diagnosed and those living with MS. The National Multiple Sclerosis Society website provides information about MS, information for living with MS, research related to MS, and a link to an online community. 

Multiple Sclerosis Foundation (MSF) The MSF is a nonprofit, tax-exempt public organization that provides a comprehensive approach to helping people with MS maintain their health and well-being. This involves keeping individuals self-sufficient and ensuring their homes are safe, in addition to offering educational programs that heighten public awareness and promote understanding about the disease. The MSF website provides information about the organization, information about MS, recommendations for coping with MS, descriptions of programs and activities, related publications, information for health care professionals, and a link to the MS community. 

Muscular Dystrophy 

Muscular Dystrophy Association (MDA) The MDA is a nonprofit health agency dedicated to curing muscular dystrophy, ALS, and related diseases by funding worldwide research and providing comprehensive health care, support services, advocacy, and education. The MDA website provides information on the diseases, information for families, and information for researchers and medical personnel. 

Muscular Dystrophy Family Foundation, Inc. (MDFF) The MDFF provides resources, services, and adaptive equipment to enable patients with muscular dystrophy and their family members to live independent and productive lives. The MDFF website provides information about the organization, a listing of upcoming events, methods to get involved, a library of related resources, and a description of available services. 

Parent Project Muscular Dystrophy (PPMD) PPMD is a nonprofit organization focused entirely on the fight against Duchenne muscular dystrophy by funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options. The PPMD website provides information to help understand Duchenne muscular dystrophy, information for caring for individuals with disease, descriptions of research, an overview of the PPMD, and an online community. 

Myasthenia Gravis 

Myasthenia Gravis Foundation of America, Inc. (MGFA) The MGFA is a nonprofit organization designed to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and closely related disorders, and to improve their lives through programs of patient services, public information, medical research, professional education, advocacy, and patient care. The MGFA website provides information about the foundation, a listing of local MGFA chapters, information about myasthenia gravis, patient education materials, and information specifically targeted at health care professionals. 

Myelin Disorders 

The Myelin Project The Myelin Project is an international, grassroots organization whose mission is to accelerate medical research on myelin repair. The Myelin Project website provides information on demyelinating disorders, information about the project, news and media, descriptions of related research, a listing of upcoming events, and links to additional products. 

Myelitis 

Transverse Myelitis Association (TMA) TMA is a nonprofit organization dedicated to advocacy for those who have transverse myelitis, acute disseminated encephalomyelitis (ADEM), optic neuritis, or neuromyelitis optica (Devic's disease). The TMA facilitates support and networking opportunities amongst families; provides educational information; functions as a clearinghouse for related articles and research literature; and investigates, advocates, and supports research and innovative treatment efforts. The TMA website provides information on each of the diseases, a newsletter, streaming video presentations, message forums, links to support groups, and links to additional resources. 

Myeloma 

International Myeloma Foundation (IMF) IMF is a charitable organization that provides up to date and in-depth information about multiple myeloma including research and treatment advances. The foundation's website provides information about the IMF, a listing of upcoming events, and links to research, education, support, and advocacy programs. 

Myoclonus 

National Pediatric Myoclonus Center (NPMC) The NPMC provides the best care possible for patients whose myoclonus began during childhood. The National Pediatric Myoclonus Center website provides information on opsoclonus-myoclonus syndrome, answers to frequently asked questions, a listing of upcoming conferences, fact sheets, information for parents, links to related research and references, and links to grants and financial assistance. 

Myositis Inflammatory Myopathiesis 

The Myositis Association (TMA) The TMA is a nonprofit organization that acts as a resource for patients and the medical community, advocates for patients, and promotes research into the causes and treatment of inflammatory myopathies. The TMA website provides information about myositis; information specifically targeted to health professionals; information targeted to patients, families, and caregivers; links to an online community for finding support groups and discussion boards; descriptions of related research; additional resources; and a section containing information about juvenile myositis. 

Myotubular Myopathy 

Myotubular Myopathy Resource Group The Myotubular Myopathy Resource Group website contains information about the three forms of myotubular myopathy (x-linked, autosomal recessive, and autosomal dominant), information targeted at families, newsletters, answers to frequently asked questions, descriptions of related research, and a link to a discussion group. 

Nager & Miller Syndromes 

Foundation for Nager and Miller Syndromes (FNMS) FNMS is an international support group dedicated to helping those affected by these two similar genetic conditions which involve severe facial and limb anomalies, but do not usually affect intellect.  The FNMS website provides information on the syndromes, a listing of upcoming events, newsletters, a FNMS blog, and links to an online forum. 

Neurofibromatosis 

Children's Tumor Foundation The Children's Tumor Foundation is a nonprofit medical foundation dedicated to improving the health and well-being of individuals and families affected by neurofibromatoses (NF).  The Children's Tumor Foundation website provides information about the foundation, information for children living with NF, information for scientists and clinicians, and a listing of upcoming events. 

Neurofibromatosis, Inc.  Neurofibromatosis, Inc. is an organization of independent state and regional chapters that provides support and services to NF families and works closely with clinical and research professionals who specialize in the treatment of NF. The Neurofibromatosis, Inc. website provides information on NF, recommendations for getting involved, support resources, descriptions of related research and education materials, and links to related news and events. 

Neurotransmitter Disease 

Pediatric Neurotransmitter Disease Association (PND) PND is a nonprofit, voluntary organization whose mission is to help children and families who are affected  by a pediatric neurotransmitter disease, support the identification of new diseases of neurotransmitter metabolism, and find better treatments and ultimately a cure for those diseases that are already known. The PND website provides information on PND and PND testing, descriptions of related research, links to support materials, and a listing of fundraisings and events. 

Nevi Congenital 

Nevus Network The Nevus Network is a support group that provides educational materials, newsletters, emotional support, and contacts with others who have congenital nevus or neurocutaneous melanosis (NCM). 

Niemann-Pick Disease 

Ara Parseghian Medical Research Foundation The Ara Parseghian Medical Research Foundation is a grassroots, nonprofit, tax-exempt organization dedicated to funding medical research projects aimed at finding a treatment for Niemann-Pick type C (NP-C) disease and related neurodegenerative disorders. The Ara Parseghian Medical Research Foundation website provides information about NP-C, descriptions of related research, information about the organization, a listing of upcoming events, newsletters, and videos. 

National Nieman-Pick Disease Foundation, Inc.(NNPDF) NNPDF is an international, voluntary, nonprofit organization made up of parents, medical and educational professionals, friends, relatives, and others who are committed to finding a cure for Niemann-Pick disease. The NNPDF website provides information specifically targeted at families, donors, doctors, and researchers; foundation publications; and descriptions of related research. 

Noonan Syndrome 

The Noonan Syndrome Support Group, Inc.(TNSSG) TNSSG is a support group committed to providing support, current information, and understanding to those affected by Noonan syndrome and associated anomalies. TNSSG website provides answers to frequently asked questions, links to donating to the support group, descriptions of related research, and additional related links.

Macular Diseases 

Association for Macular Diseases, Inc. The Association for Macular Diseases is a nonprofit corporation designed to promote education and research for Macular Degeneration which is a general term used to describe a number of diseases of the retina. The Association for Macular Diseases website provides information on the organization, an encyclopedia, and news. 

Macular Degeneration Foundation The Macular Degeneration Foundation is a nonprofit, tax-exempt organization dedicated to serving the interests of those affected by macular degeneration and related low vision conditions. The Macular Degeneration Foundation website provides information about the organization, information on macular degeneration, news, and additional resources. 

Macular Degeneration International (MDI) MDI offers information and support through personal contact, over the telephone, via correspondence, on the Internet, and at a variety of seminars and national conferences. MDI, with help from its Scientific Advisory Board, also participates in research through a medical research fund and helps to facilitate research programs by recruiting patients and families for major studies. 

Malignant Hyperthermia 

Malignant Hyperthermia Association of the United States (MHAUS) The MHAUS is dedicated to the control of malignant hyperthermia (MH). The MHAUS website provides information specifically targeted at patients and information tailored to medical professionals. 

Maple Syrup Urine Disease 

Maple Syrup Urine Disease (MSUD) Family Support Group The MSUD Family Support Group is a nonprofit, tax-exempt organization for those with MSUD and their families and includes health-care professionals and others interested in MSUD. The MSUD Family Support Group website provides an overview of the organization, newsletters, featured information, and contact information for the organization. 

Marfan Syndrome 

National Marfan Foundation (NMF) The NMF is a voluntary organization that disseminates accurate and timely information about the condition to patients, family members, and the health care community; provides a network of communication for patients and relatives to share experiences, support one another, and improve their medical care; and supports and fosters research. The NMF website provides information about Marfan syndrome, living with the syndrome, and related disorders, as well as offers links to current research and advocacy related to the syndrome. 

Mast Cell Disease Systematic 

The Mastocytosis Society, Inc. (TMS) TMS is a nonprofit organization dedicated to helping patients, caregivers, and medical personnel understand mast cell disorders and the impact they have on patients' lives. The TMS website provides information on anaphylaxis, a calendar of upcoming events and conferences, news, descriptions of research, and links to support groups. 

Mental Illness 

National Alliance For The Mentally Ill (NAMI) NAMI is a nonprofit, grassroots, self-help, support and advocacy organization of consumers, families, and friends of people with severe mental illnesses, such as schizophrenia, major depression, bipolar disorder, obsessive-compulsive disorder, and anxiety disorders. The NAMI website provides information on mental illnesses, information on medications, links to support and programs, and contact information for the local NAMI. 

Substance Abuse and Mental Health Services Administration (SAMHSA) National Mental Health Information Center The SAMHSA National Mental Health Information Center provides information about mental health via a toll-free telephone number 1-800-789-2647, the SAMHSA website, and more than 600 publications. The center was developed for users of mental health services and their families, the general public, policy makers, providers, and the media. 

Mental Retardation 

American Association on Intellectual and Developmental Disabilities (AAIDD) The AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities. The AAIDD website provides information on the organization, information on conferences and training opportunities, links to publications, a listing of national resources, and links to AAIDD online communities. 

People First International People First and the self-advocacy movement have grown into an international movement in forty-three countries, with an estimated 17,000 members. 

The ARC of the United States The ARC of the United States advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. Together with their network of members and affiliated chapters, they improve systems of support and services, connect families, inspire communities, and influence public policy. 

Microcephaly 

FACES: The National Craniofacial Association FACES: The National Craniofacial Association is a nonprofit organization serving children and adults throughout the United States with severe craniofacial deformities resulting from birth defects, injuries, or disease. The FACES website provides information and resources on twenty-eight specific craniofacial disorders, networking resources for families, resource files of specialized craniofacial centers, financial aid information, and links to quarterly newsletters. 

Genetic Alliance Genetic Alliance is a nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. The Genetic Alliance website provides information and resources on available programs and services, information on public policy, a library of publications, and an events calendar. 

March of Dimes Birth Defects and Genetic Conditions March of Dimes is the leading nonprofit organization for pregnancy and baby health.  March of Dimes Birth Defects and Genetic Conditions website provides information on a variety of birth defects and genetics and has comprehensive coverage for pregnancy through caring for a newborn. 

Mitochondrial Disease 

United Mitochondrial Disease Foundation (UMDF) The UMDF promotes research and education for the diagnosis, treatment and cure of mitochondrial disorders and provides support to affected individuals and families. The UMDF website provides information on the organization, information on mitochondrial disease, and additional resources. 

MPS Disorders 

National Mucopolysaccharidoses (MPS) Society The National MPS Society supports research, supports families, and works to increase public and professional awareness. The National MPS Society website provides information on treatment and therapy options, education materials, support for individuals with MPS, a listing of upcoming events, news, and information on the society. 

Multiple Sclerosis 

National Multiple Sclerosis (MS) Society The National Multiple Sclerosis Society and its national network of chapters promote research, educate, and advocate for critical issues, as well as organize a wide range of programs including support for the newly diagnosed and those living with MS. The National Multiple Sclerosis Society website provides information about MS, information for living with MS, research related to MS, and a link to an online community. 

Multiple Sclerosis Foundation (MSF) The MSF is a nonprofit, tax-exempt public organization that provides a comprehensive approach to helping people with MS maintain their health and well-being. This involves keeping individuals self-sufficient and ensuring their homes are safe, in addition to offering educational programs that heighten public awareness and promote understanding about the disease. The MSF website provides information about the organization, information about MS, recommendations for coping with MS, descriptions of programs and activities, related publications, information for health care professionals, and a link to the MS community. 

Muscular Dystrophy 

Muscular Dystrophy Association (MDA) The MDA is a nonprofit health agency dedicated to curing muscular dystrophy, ALS, and related diseases by funding worldwide research and providing comprehensive health care, support services, advocacy, and education. The MDA website provides information on the diseases, information for families, and information for researchers and medical personnel. 

Muscular Dystrophy Family Foundation, Inc. (MDFF) The MDFF provides resources, services, and adaptive equipment to enable patients with muscular dystrophy and their family members to live independent and productive lives. The MDFF website provides information about the organization, a listing of upcoming events, methods to get involved, a library of related resources, and a description of available services. 

Parent Project Muscular Dystrophy (PPMD) PPMD is a nonprofit organization focused entirely on the fight against Duchenne muscular dystrophy by funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options. The PPMD website provides information to help understand Duchenne muscular dystrophy, information for caring for individuals with disease, descriptions of research, an overview of the PPMD, and an online community. 

Myasthenia Gravis 

Myasthenia Gravis Foundation of America, Inc. (MGFA) The MGFA is a nonprofit organization designed to facilitate the timely diagnosis and optimal care of individuals affected by myasthenia gravis and closely related disorders, and to improve their lives through programs of patient services, public information, medical research, professional education, advocacy, and patient care. The MGFA website provides information about the foundation, a listing of local MGFA chapters, information about myasthenia gravis, patient education materials, and information specifically targeted at health care professionals. 

Myelin Disorders 

The Myelin Project The Myelin Project is an international, grassroots organization whose mission is to accelerate medical research on myelin repair. The Myelin Project website provides information on demyelinating disorders, information about the project, news and media, descriptions of related research, a listing of upcoming events, and links to additional products. 

Myelitis 

Transverse Myelitis Association (TMA) TMA is a nonprofit organization dedicated to advocacy for those who have transverse myelitis, acute disseminated encephalomyelitis (ADEM), optic neuritis, or neuromyelitis optica (Devic's disease). The TMA facilitates support and networking opportunities amongst families; provides educational information; functions as a clearinghouse for related articles and research literature; and investigates, advocates, and supports research and innovative treatment efforts. The TMA website provides information on each of the diseases, a newsletter, streaming video presentations, message forums, links to support groups, and links to additional resources. 

Myeloma 

International Myeloma Foundation (IMF) IMF is a charitable organization that provides up to date and in-depth information about multiple myeloma including research and treatment advances. The foundation's website provides information about the IMF, a listing of upcoming events, and links to research, education, support, and advocacy programs. 

Myoclonus 

National Pediatric Myoclonus Center (NPMC) The NPMC provides the best care possible for patients whose myoclonus began during childhood. The National Pediatric Myoclonus Center website provides information on opsoclonus-myoclonus syndrome, answers to frequently asked questions, a listing of upcoming conferences, fact sheets, information for parents, links to related research and references, and links to grants and financial assistance. 

Myositis Inflammatory Myopathiesis 

The Myositis Association (TMA) The TMA is a nonprofit organization that acts as a resource for patients and the medical community, advocates for patients, and promotes research into the causes and treatment of inflammatory myopathies. The TMA website provides information about myositis; information specifically targeted to health professionals; information targeted to patients, families, and caregivers; links to an online community for finding support groups and discussion boards; descriptions of related research; additional resources; and a section containing information about juvenile myositis. 

Myotubular Myopathy 

Myotubular Myopathy Resource Group The Myotubular Myopathy Resource Group website contains information about the three forms of myotubular myopathy (x-linked, autosomal recessive, and autosomal dominant), information targeted at families, newsletters, answers to frequently asked questions, descriptions of related research, and a link to a discussion group. 

Nager & Miller Syndromes 

Foundation for Nager and Miller Syndromes (FNMS) FNMS is an international support group dedicated to helping those affected by these two similar genetic conditions which involve severe facial and limb anomalies, but do not usually affect intellect.  The FNMS website provides information on the syndromes, a listing of upcoming events, newsletters, a FNMS blog, and links to an online forum. 

Neurofibromatosis 

Children's Tumor Foundation The Children's Tumor Foundation is a nonprofit medical foundation dedicated to improving the health and well-being of individuals and families affected by neurofibromatoses (NF).  The Children's Tumor Foundation website provides information about the foundation, information for children living with NF, information for scientists and clinicians, and a listing of upcoming events. 

Neurofibromatosis, Inc.  Neurofibromatosis, Inc. is an organization of independent state and regional chapters that provides support and services to NF families and works closely with clinical and research professionals who specialize in the treatment of NF. The Neurofibromatosis, Inc. website provides information on NF, recommendations for getting involved, support resources, descriptions of related research and education materials, and links to related news and events. 

Neurotransmitter Disease 

Pediatric Neurotransmitter Disease Association (PND) PND is a nonprofit, voluntary organization whose mission is to help children and families who are affected  by a pediatric neurotransmitter disease, support the identification of new diseases of neurotransmitter metabolism, and find better treatments and ultimately a cure for those diseases that are already known. The PND website provides information on PND and PND testing, descriptions of related research, links to support materials, and a listing of fundraisings and events. 

Nevi Congenital 

Nevus Network The Nevus Network is a support group that provides educational materials, newsletters, emotional support, and contacts with others who have congenital nevus or neurocutaneous melanosis (NCM). 

Niemann-Pick Disease 

Ara Parseghian Medical Research Foundation The Ara Parseghian Medical Research Foundation is a grassroots, nonprofit, tax-exempt organization dedicated to funding medical research projects aimed at finding a treatment for Niemann-Pick type C (NP-C) disease and related neurodegenerative disorders. The Ara Parseghian Medical Research Foundation website provides information about NP-C, descriptions of related research, information about the organization, a listing of upcoming events, newsletters, and videos. 

National Nieman-Pick Disease Foundation, Inc.(NNPDF) NNPDF is an international, voluntary, nonprofit organization made up of parents, medical and educational professionals, friends, relatives, and others who are committed to finding a cure for Niemann-Pick disease. The NNPDF website provides information specifically targeted at families, donors, doctors, and researchers; foundation publications; and descriptions of related research. 

Noonan Syndrome 

The Noonan Syndrome Support Group, Inc.(TNSSG) TNSSG is a support group committed to providing support, current information, and understanding to those affected by Noonan syndrome and associated anomalies. TNSSG website provides answers to frequently asked questions, links to donating to the support group, descriptions of related research, and additional related links.

Osteogenesis Imperfecta 

Osteogenesis Imperfecta (OI) Foundation The OI Foundation strives to improve the quality of life for individuals affected by OI through research to find a cure, education, awareness, and mutual support.  The OI Foundation website provides information about OI, resources related to OI, links to support networks, descriptions of related research and studies, information about the foundation, a chat room and social network, and a listing of upcoming events. 

Ostomy 

United Ostomy Association of America, Inc. (UOAA) The UOAA is a volunteer-based health organization dedicated to providing education, information, support, and advocacy for people who have had or will have intestinal or urinary diversions. The UOAA website provides information on the organization, ostomy information, links to support groups and discussion boards, a listing of upcoming conferences and events, advocacy information, and a link to the organization’s official magazine The Phoenix. 

Oxalosis and Hyperoxaluria 

Oxalosis and Hyperoxaluria Foundation (OHF) The OHF strives to seek the cause, improve the clinical treatment, and discover the cure for hyperoxaluria and oxalate stone disease, as well as enhance the quality of life of patients and their families. The OHF website provides information on the organization and disease, related resources, and information specifically targeted at patients and professionals. 

Pituitary Disorders 

Pituitary Network Association (PNA) The PNA is an international nonprofit organization for patients with pituitary tumors and disorders, their families, loved ones, and physicians and health care providers. The PNA website provides information on the organization, medical resources, an online knowledge base, links to forums and support groups, a listing of upcoming events, and descriptions of related research. 

Polio 

Post-Polio Health International (PHI) PHI is a nonprofit, tax-exempt organization that strives to enhance the lives and independence of polio survivors and home mechanical ventilator users by promoting education, networking, and advocacy among these individuals and health care providers. The PHI website provides information on the organization, education materials, advocacy materials, descriptions of related research, and networking opportunities. 

Prader-Willi Syndrome 

Prader-Willi Syndrome Association (PWSA) The PWSA is an organization of families and professionals working together to promote and fund research, provide education, and offer support to enhance the quality of life of those affected by Prader-Willi syndrome. The PWSA website provides information the syndrome, information related to the medical aspect of Prader-Willi syndrome, descriptions of related research, support resources, and additional publications from the organization. 

Pseudoxanthoma Elasticum (PXE) 

National Association for Pseudoxanthoma Elasticum (NAPE) NAPE is an organization committed to the support for people who have PXE. The NAPE website provides information on the organization, basic information on PXE, answers to frequently asked questions, articles, newsletters, and a link to the "PXE Pals" program that links individuals living with PXE. 

Psoriasis 

National Psoriasis Foundation The National Psoriasis Foundation is a psoriasis patient advocacy organization that strives to find a cure for psoriasis and psoriatic arthritis and eliminate their devastating effects through research, advocacy, and education. The National Psoriasis Foundation website provides information on related research, advocacy resources, a listing of upcoming events, information specifically for medical providers, and a link to the foundation's magazine, Psoriasis Advance. 

Reflex Sympathetic Dystrophy (RSD) Syndrome 

Reflex Sympathetic Dystrophy Syndrome Association Of America (RSDSA) The RSDSA is a national, nonprofit organization that promotes greater public and professional awareness of RSD/Complex Regional Pain Syndrome (CRPS), a painful neurological syndrome that may affect more than 1.5 million Americans. The RSDSA website provides information on the organization, awareness materials, a listing of upcoming events, publications, descriptions of related research, information on treatment, links to support groups, and additional resources. 

Retinitis Pigmentosa (RP) 

Retinitis Pigmentosa International (RPI) RPI is a charitable organization that offers facilities for demonstrating the latest in visual aids for the partially sighted. The RPI website provides information on research, eye tests, and TheatreVision, a program that makes films accessible to visually challenged. 

Rett Syndrome 

International Rett Syndrome Foundation (IRSF) The IRSF is an organization dedicated to supporting and encouraging research to determine the cause, treatment, and cure for Rett syndrome; to increasing public awareness of Rett syndrome; and to providing informational and emotional support to families of children with Rett syndrome. The IRSF website provides information on Rett syndrome, information on the organization, descriptions of related research, information for families, and links to online support communities. 

Osteogenesis Imperfecta 

Osteogenesis Imperfecta (OI) Foundation The OI Foundation strives to improve the quality of life for individuals affected by OI through research to find a cure, education, awareness, and mutual support.  The OI Foundation website provides information about OI, resources related to OI, links to support networks, descriptions of related research and studies, information about the foundation, a chat room and social network, and a listing of upcoming events. 

Ostomy 

United Ostomy Association of America, Inc. (UOAA) The UOAA is a volunteer-based health organization dedicated to providing education, information, support, and advocacy for people who have had or will have intestinal or urinary diversions. The UOAA website provides information on the organization, ostomy information, links to support groups and discussion boards, a listing of upcoming conferences and events, advocacy information, and a link to the organization’s official magazine The Phoenix. 

Oxalosis and Hyperoxaluria 

Oxalosis and Hyperoxaluria Foundation (OHF) The OHF strives to seek the cause, improve the clinical treatment, and discover the cure for hyperoxaluria and oxalate stone disease, as well as enhance the quality of life of patients and their families. The OHF website provides information on the organization and disease, related resources, and information specifically targeted at patients and professionals. 

Pituitary Disorders 

Pituitary Network Association (PNA) The PNA is an international nonprofit organization for patients with pituitary tumors and disorders, their families, loved ones, and physicians and health care providers. The PNA website provides information on the organization, medical resources, an online knowledge base, links to forums and support groups, a listing of upcoming events, and descriptions of related research. 

Polio 

Post-Polio Health International (PHI) PHI is a nonprofit, tax-exempt organization that strives to enhance the lives and independence of polio survivors and home mechanical ventilator users by promoting education, networking, and advocacy among these individuals and health care providers. The PHI website provides information on the organization, education materials, advocacy materials, descriptions of related research, and networking opportunities. 

Prader-Willi Syndrome 

Prader-Willi Syndrome Association (PWSA) The PWSA is an organization of families and professionals working together to promote and fund research, provide education, and offer support to enhance the quality of life of those affected by Prader-Willi syndrome. The PWSA website provides information the syndrome, information related to the medical aspect of Prader-Willi syndrome, descriptions of related research, support resources, and additional publications from the organization. 

Pseudoxanthoma Elasticum (PXE) 

National Association for Pseudoxanthoma Elasticum (NAPE) NAPE is an organization committed to the support for people who have PXE. The NAPE website provides information on the organization, basic information on PXE, answers to frequently asked questions, articles, newsletters, and a link to the "PXE Pals" program that links individuals living with PXE. 

Psoriasis 

National Psoriasis Foundation The National Psoriasis Foundation is a psoriasis patient advocacy organization that strives to find a cure for psoriasis and psoriatic arthritis and eliminate their devastating effects through research, advocacy, and education. The National Psoriasis Foundation website provides information on related research, advocacy resources, a listing of upcoming events, information specifically for medical providers, and a link to the foundation's magazine, Psoriasis Advance. 

Reflex Sympathetic Dystrophy (RSD) Syndrome 

Reflex Sympathetic Dystrophy Syndrome Association Of America (RSDSA) The RSDSA is a national, nonprofit organization that promotes greater public and professional awareness of RSD/Complex Regional Pain Syndrome (CRPS), a painful neurological syndrome that may affect more than 1.5 million Americans. The RSDSA website provides information on the organization, awareness materials, a listing of upcoming events, publications, descriptions of related research, information on treatment, links to support groups, and additional resources. 

Retinitis Pigmentosa (RP) 

Retinitis Pigmentosa International (RPI) RPI is a charitable organization that offers facilities for demonstrating the latest in visual aids for the partially sighted. The RPI website provides information on research, eye tests, and TheatreVision, a program that makes films accessible to visually challenged. 

Rett Syndrome 

International Rett Syndrome Foundation (IRSF) The IRSF is an organization dedicated to supporting and encouraging research to determine the cause, treatment, and cure for Rett syndrome; to increasing public awareness of Rett syndrome; and to providing informational and emotional support to families of children with Rett syndrome. The IRSF website provides information on Rett syndrome, information on the organization, descriptions of related research, information for families, and links to online support communities. 

Scleroderma 

Scleroderma Foundation The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends. The Scleroderma Foundation website provides information about the organization, educational resources, current related news, descriptions of related research, advocacy materials, and links to local chapters and support groups. 

Scoliosis 

National Scoliosis Foundation (NSF) The NSF is a nonprofit organization dedicated to helping children, parents, adults, and health care providers with the complexities of scoliosis and related spinal disorders. The NSF website provides information on the organization, educational materials, information and support materials, resources, and a link to an online forum. 

Short Stature 

Little People of America, Inc. (LPA) The LPA is a nonprofit organization that provides support and information to people of short stature and their families. The LPA website provides resources pertaining to dwarfism, medical data, instructions on how to join an e-mail discussion group, and links to other dwarfism-related sites. 

Sotos Syndrome 

Sotos Syndrome Support Association (SSSA) The SSSA is nonprofit organization that provides a social support environment for professionals and families of individuals affected by Sotos syndrome. The SSSA website provides information on the organization and syndrome, a listing of upcoming conferences, related publications, a newsletter, and links to additional related resources. 

Speech 

The Childhood Apraxia of Speech Association of North America (CASANA) CASANA is a nonprofit, tax-exempt, publicly funded charity whose mission is to strengthen the support systems in the lives of children with apraxia so that each child is afforded the best opportunity to develop speech. 

Spinal Cord Injuries 

Christopher and Dana Reeve Paralysis Resource Center (PRC) The PRC is a program of the Christopher Reeve Paralysis Foundation that provides a comprehensive, national source of information for people living with paralysis and their caregivers to promote health, foster involvement in the community, and improve quality of life.  The PRC website provides information on basic conditions, facts about paralysis and its impact, educational materials for living a healthy life, fact sheets, and a tool for finding resources in the local area. 

Spinal Muscular Atrophy 

Families of Spinal Muscular Atrophy (FSMA) FSMA is an largest international organization dedicated solely to eradicating spinal muscular atrophy (SMA) by promoting and supporting research; helping families cope with SMA through informational programs and support; and educating the public and professional community about SMA. The FMSA website provides information for the newly diagnosed, information on SMA, information on the organization, and information specifically targeted to researchers and the media. 

Spina Bifida 

Spina Bifida Association (SBA) The SBA is a national voluntary health agency solely dedicated to enhancing the lives of those with spina bifida and those whose lives are touched by this challenging birth defect by providing education, advocacy, research, and service. The SBA website provides information on spina bifida, descriptions of available programs and services, recommendation on how to help, and a listing of upcoming events. 

Stickler Syndrome 

Stickler Involved People (SIP) SIP is a nonprofit organization whose purpose is to educate and give support to all those affected by Stickler syndrome. The SIP website provides information on the SIP annual conferences, a teacher's help page, answers to frequently asked questions, articles related to Stickler syndrome, links to related research, and a physician advisory listing. 

Stroke 

National Stroke Association (NSA)  The NSA provides education, services, and community-based activities in prevention, treatment, rehabilitation, and recovery. NSA serves the professional community, people at risk, patients, health care providers, stroke survivors, families, and caregivers. The NSA website provides information on strokes, a list of risk factors for a stroke, prevention materials, and materials to help individuals recover from a stroke. 

Sturge-Weber Syndrome 

The Sturge-Weber Foundation (SWF) The SWF is an international nonprofit, tax-exempt organization for patients, parents, professionals, and others concerned with Sturge-Weber syndrome (SWS).  The SWF website provides information on the organization, information about SWS, links to related research, and additional SWS-related resources. 

Stuttering 

Stuttering Foundation of America The Stuttering Foundation of America is a private, nonprofit, tax-exempt organization that strives to provide the best and most current information and help available for the prevention of stuttering in young children, as well as the most effective treatment available for teenagers and adults. The Stuttering Foundation of America website provides free online resources, services and support to those who stutter and their families, and support for research into the causes of stuttering. 

The National Center for Stuttering The National Center for Stuttering provides up-to-date factual information about stuttering and the National Stutterer's Hotline, and conducts research into the causes and treatment of stuttering. 

Sudden Arrhythmia Death Syndromes 

Sudden Arrhythmia Death Syndromes (SADS) Foundation The SADS Foundation is committed to supporting families and individuals with genetically mediated cardiac arrhythmias through education, research, and advocacy. 

Sudden Infant Death Syndrome (SIDS) 

Back to Sleep Campaign Provided by Healthy Child Care America (HCCA), the Back to Sleep Campaign aims to promote the health and safety of infants in child care settings by providing education and outreach to child care providers regarding safe sleep recommendations. The Back to Sleep Campaign website provides information for health care professionals, information for early education and child care professionals, information for families, a resource library, and contact information for local chapters. 

National SIDS Resource Center (NSRC) The NSRC serves as a central source of information on sudden infant death and on promoting healthy outcomes for infants from the prenatal period through the first year of life. The NSRC website provides information services and technical assistance on SIDS and related topics.

Scleroderma 

Scleroderma Foundation The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends. The Scleroderma Foundation website provides information about the organization, educational resources, current related news, descriptions of related research, advocacy materials, and links to local chapters and support groups. 

Scoliosis 

National Scoliosis Foundation (NSF) The NSF is a nonprofit organization dedicated to helping children, parents, adults, and health care providers with the complexities of scoliosis and related spinal disorders. The NSF website provides information on the organization, educational materials, information and support materials, resources, and a link to an online forum. 

Short Stature 

Little People of America, Inc. (LPA) The LPA is a nonprofit organization that provides support and information to people of short stature and their families. The LPA website provides resources pertaining to dwarfism, medical data, instructions on how to join an e-mail discussion group, and links to other dwarfism-related sites. 

Sotos Syndrome 

Sotos Syndrome Support Association (SSSA) The SSSA is nonprofit organization that provides a social support environment for professionals and families of individuals affected by Sotos syndrome. The SSSA website provides information on the organization and syndrome, a listing of upcoming conferences, related publications, a newsletter, and links to additional related resources. 

Speech 

The Childhood Apraxia of Speech Association of North America (CASANA) CASANA is a nonprofit, tax-exempt, publicly funded charity whose mission is to strengthen the support systems in the lives of children with apraxia so that each child is afforded the best opportunity to develop speech. 

Spinal Cord Injuries 

Christopher and Dana Reeve Paralysis Resource Center (PRC) The PRC is a program of the Christopher Reeve Paralysis Foundation that provides a comprehensive, national source of information for people living with paralysis and their caregivers to promote health, foster involvement in the community, and improve quality of life.  The PRC website provides information on basic conditions, facts about paralysis and its impact, educational materials for living a healthy life, fact sheets, and a tool for finding resources in the local area. 

Spinal Muscular Atrophy 

Families of Spinal Muscular Atrophy (FSMA) FSMA is an largest international organization dedicated solely to eradicating spinal muscular atrophy (SMA) by promoting and supporting research; helping families cope with SMA through informational programs and support; and educating the public and professional community about SMA. The FMSA website provides information for the newly diagnosed, information on SMA, information on the organization, and information specifically targeted to researchers and the media. 

Spina Bifida 

Spina Bifida Association (SBA) The SBA is a national voluntary health agency solely dedicated to enhancing the lives of those with spina bifida and those whose lives are touched by this challenging birth defect by providing education, advocacy, research, and service. The SBA website provides information on spina bifida, descriptions of available programs and services, recommendation on how to help, and a listing of upcoming events. 

Stickler Syndrome 

Stickler Involved People (SIP) SIP is a nonprofit organization whose purpose is to educate and give support to all those affected by Stickler syndrome. The SIP website provides information on the SIP annual conferences, a teacher's help page, answers to frequently asked questions, articles related to Stickler syndrome, links to related research, and a physician advisory listing. 

Stroke 

National Stroke Association (NSA)  The NSA provides education, services, and community-based activities in prevention, treatment, rehabilitation, and recovery. NSA serves the professional community, people at risk, patients, health care providers, stroke survivors, families, and caregivers. The NSA website provides information on strokes, a list of risk factors for a stroke, prevention materials, and materials to help individuals recover from a stroke. 

Sturge-Weber Syndrome 

The Sturge-Weber Foundation (SWF) The SWF is an international nonprofit, tax-exempt organization for patients, parents, professionals, and others concerned with Sturge-Weber syndrome (SWS).  The SWF website provides information on the organization, information about SWS, links to related research, and additional SWS-related resources. 

Stuttering 

Stuttering Foundation of America The Stuttering Foundation of America is a private, nonprofit, tax-exempt organization that strives to provide the best and most current information and help available for the prevention of stuttering in young children, as well as the most effective treatment available for teenagers and adults. The Stuttering Foundation of America website provides free online resources, services and support to those who stutter and their families, and support for research into the causes of stuttering. 

The National Center for Stuttering The National Center for Stuttering provides up-to-date factual information about stuttering and the National Stutterer's Hotline, and conducts research into the causes and treatment of stuttering. 

Sudden Arrhythmia Death Syndromes 

Sudden Arrhythmia Death Syndromes (SADS) Foundation The SADS Foundation is committed to supporting families and individuals with genetically mediated cardiac arrhythmias through education, research, and advocacy. 

Sudden Infant Death Syndrome (SIDS) 

Back to Sleep Campaign Provided by Healthy Child Care America (HCCA), the Back to Sleep Campaign aims to promote the health and safety of infants in child care settings by providing education and outreach to child care providers regarding safe sleep recommendations. The Back to Sleep Campaign website provides information for health care professionals, information for early education and child care professionals, information for families, a resource library, and contact information for local chapters. 

National SIDS Resource Center (NSRC) The NSRC serves as a central source of information on sudden infant death and on promoting healthy outcomes for infants from the prenatal period through the first year of life. The NSRC website provides information services and technical assistance on SIDS and related topics.

Tay-Sachs Disease 

National Tay-Sachs & Allied Diseases Association (NTSAD) The NTSAD is an organization dedicated to the treatment and prevention of Tay-Sachs disease, Canavan disease, and related diseases. The NTSAD provides information and support services to individuals and families affected by these diseases, as well as the public at large. Strategies for achieving these goals include public and professional education, research, genetic screening, family services, and advocacy. 

Tourette’s Syndrome 

Tourette Syndrome Association (TSA) The TSA is a national voluntary nonprofit membership organization dedicated to identifying the cause of, finding the cure for, and controlling the effects of Tourette's syndrome (TS). The TSA website provides information for people with TS, descriptions of related research, information for medical providers and educators, education materials, and newsletters. 

Tremor 

International Essential Tremor Foundation (IEFT) The IETF provides information, services, and support to individuals and families affected by essential tremor (ET). The organization encourages and promotes research in an effort to determine the causes, treatment, and ultimately the cure for ET. 

Trisomy 18, 13 

Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) SOFT is a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children. The SOFT website provides information on the organization, links to related publications and newsletters, local contacts, and information specifically targeted at professionals and families. 

Turner Syndrome Society of the United States (TSSUS) The TSSUS provides health-related resources to patients, families, and physicians for the diagnosis and treatment of Turner syndrome. The TSSUS website provides information on the organization, information on Turner Syndrome, descriptions of related research, and links to online resources. 

Tuberous Sclerosis 

Tuberous Sclerosis (TS) Alliance The TS Alliance is a national voluntary health organization for the genetic disorder known as tuberous sclerosis complex (TSC). The TS Alliance strives to improve the quality of life for individuals and families affected by tuberous sclerosis complex (TSC) through the stimulation and sponsorship of research; the development of programs, support services, and resource information; and the development and implementation of public and professional education programs designed to heighten awareness of TSC. 

Urea Cycle Disorders 

National Urea Cycle Disorders Foundation (NUCDF) The NUCDF is a nonprofit organization dedicated to the identification, treatment, and cure of urea cycle disorders. The NUCDF website provides information about the organization, answers to frequently asked questions, links to additional resources, descriptions of related research, family support materials, and a listing of upcoming events. 

Vestibular Disorders 

Vestibular Disorders Association (VEDA) VEDA is a nonprofit organization that provides information to the public about inner-ear balance disorders such as Meniere's disease, benign paroxysmal positional vertigo, and labyrinthitis. The VEDA website provides information on vestibular disorders, resources to find health professionals, links for support and coping, publications and membership information, and information specifically for health professionals. 

Visual Impairments 

American Council of the Blind (ACB) The ACB strives to improve the well-being of all blind and visually impaired people by serving as a representative national organization of blind people; elevating the social, economic and cultural levels of blind people; improving educational and rehabilitation facilities and opportunities; cooperating with the public and private institutions and organizations concerned with blind services; encouraging and assisting all blind people to develop their abilities; and conducting a public education program to promote greater understanding of blindness and the capabilities of blind people. 

American Foundation for the Blind (AFB) The AFB is a national nonprofit organization that is dedicated to addressing the critical issues of literacy, independent living, employment, and access through technology for the ten million Americans who are blind or visually impaired. The AFB website provides education materials on living with vision loss, information on the organization, and a listing of organizations that provide services to people who are blind or visually impaired.  

Aurora Ministries Aurora Ministries offers free audio bibles for the blind and print handicapped in approximately seventy languages. 

Braille Institute of America The Braille Institute of America is a nonprofit organization dedicated to eliminating blindness and severe sight loss. The Braille Institute of America website provides information about low vision, a description of available services, additional resources, information about the organization, and a listing of locations. 

Helen Keller Services For the Blind (HKSB) The HKSB is a nonprofit agency with a spectrum of special services that guide legally blind New Yorkers, young and old alike, toward a life of independence and success. With its diverse services, HKSB often works one on one to teach, educate, and rehabilitate thousands of clients according to their individual needs. The HKSB website provides information on the available services and programs, news and events, workshops and seminars, and vision resources. 

Lighthouse International Lighthouse International is a nonprofit organization dedicated to preserving vision and helping people of all ages overcome the challenges of vision loss through clinical services, education, research, and advocacy. The Lighthouse International website provides descriptions of available services and assistance, information about low vision and blindness, eye health information, descriptions of related research, and upcoming events. 

National Federation for the Blind (NFB) The NFB is the largest and most influential membership organization of blind people in the United States, improving blind people's lives through advocacy, education, research, technology, and programs encouraging independence and self-confidence. The NFB website provides information on the organization, information about vision loss, descriptions of products and technology, publications, and additional resources. 

Recording for the Blind & Dyslexic (RFB&D) The RFB&D works with leading publishers and technology innovators to bring accessible materials to individuals with visual and learning disabilities. The RFB&D website provides information about the organization, membership information, an audiobook catalog, and training and support materials. 

Vitiligo 

National Vitiligo Foundation The National Vitiligo Foundation website serves as a clearinghouse for information about vitiligo, for both people with vitiligo and the general public.

Von Hippel-Lindau (VHL) Syndrome 

Von Hippel-Lindau Family Alliance (VHLFA) The VHLFA provides information for families and physicians about the disorder, and local self-help support groups for families affected by VHL. The VHLFA website provides basic facts about VHL, information for caring for one’s health, descriptions of related research, professional information, and information about the organization. 

Williams Syndrome 

Williams Syndrome Foundation (WSF) The WSF seeks to create or enhance opportunities in education, housing, employment, and recreation for people who have Williams syndrome and other related or similar conditions by identifying, initiating, funding, and providing strategic guidance for major, long-range development projects, either by itself, or through cooperation with other organizations.

Tay-Sachs Disease 

National Tay-Sachs & Allied Diseases Association (NTSAD) The NTSAD is an organization dedicated to the treatment and prevention of Tay-Sachs disease, Canavan disease, and related diseases. The NTSAD provides information and support services to individuals and families affected by these diseases, as well as the public at large. Strategies for achieving these goals include public and professional education, research, genetic screening, family services, and advocacy. 

Tourette’s Syndrome 

Tourette Syndrome Association (TSA) The TSA is a national voluntary nonprofit membership organization dedicated to identifying the cause of, finding the cure for, and controlling the effects of Tourette's syndrome (TS). The TSA website provides information for people with TS, descriptions of related research, information for medical providers and educators, education materials, and newsletters. 

Tremor 

International Essential Tremor Foundation (IEFT) The IETF provides information, services, and support to individuals and families affected by essential tremor (ET). The organization encourages and promotes research in an effort to determine the causes, treatment, and ultimately the cure for ET. 

Trisomy 18, 13 

Support Organization for Trisomy 18, 13, and Related Disorders (SOFT) SOFT is a nonprofit volunteer organization offering support for parents who have had or are expecting a child with a chromosome disorder (especially Trisomy 18 and Trisomy 13), and education to families and professionals interested in the care of these children. The SOFT website provides information on the organization, links to related publications and newsletters, local contacts, and information specifically targeted at professionals and families. 

Turner Syndrome Society of the United States (TSSUS) The TSSUS provides health-related resources to patients, families, and physicians for the diagnosis and treatment of Turner syndrome. The TSSUS website provides information on the organization, information on Turner Syndrome, descriptions of related research, and links to online resources. 

Tuberous Sclerosis 

Tuberous Sclerosis (TS) Alliance The TS Alliance is a national voluntary health organization for the genetic disorder known as tuberous sclerosis complex (TSC). The TS Alliance strives to improve the quality of life for individuals and families affected by tuberous sclerosis complex (TSC) through the stimulation and sponsorship of research; the development of programs, support services, and resource information; and the development and implementation of public and professional education programs designed to heighten awareness of TSC. 

Urea Cycle Disorders 

National Urea Cycle Disorders Foundation (NUCDF) The NUCDF is a nonprofit organization dedicated to the identification, treatment, and cure of urea cycle disorders. The NUCDF website provides information about the organization, answers to frequently asked questions, links to additional resources, descriptions of related research, family support materials, and a listing of upcoming events. 

Vestibular Disorders 

Vestibular Disorders Association (VEDA) VEDA is a nonprofit organization that provides information to the public about inner-ear balance disorders such as Meniere's disease, benign paroxysmal positional vertigo, and labyrinthitis. The VEDA website provides information on vestibular disorders, resources to find health professionals, links for support and coping, publications and membership information, and information specifically for health professionals. 

Visual Impairments 

American Council of the Blind (ACB) The ACB strives to improve the well-being of all blind and visually impaired people by serving as a representative national organization of blind people; elevating the social, economic and cultural levels of blind people; improving educational and rehabilitation facilities and opportunities; cooperating with the public and private institutions and organizations concerned with blind services; encouraging and assisting all blind people to develop their abilities; and conducting a public education program to promote greater understanding of blindness and the capabilities of blind people. 

American Foundation for the Blind (AFB) The AFB is a national nonprofit organization that is dedicated to addressing the critical issues of literacy, independent living, employment, and access through technology for the ten million Americans who are blind or visually impaired. The AFB website provides education materials on living with vision loss, information on the organization, and a listing of organizations that provide services to people who are blind or visually impaired.  

Aurora Ministries Aurora Ministries offers free audio bibles for the blind and print handicapped in approximately seventy languages. 

Braille Institute of America The Braille Institute of America is a nonprofit organization dedicated to eliminating blindness and severe sight loss. The Braille Institute of America website provides information about low vision, a description of available services, additional resources, information about the organization, and a listing of locations. 

Helen Keller Services For the Blind (HKSB) The HKSB is a nonprofit agency with a spectrum of special services that guide legally blind New Yorkers, young and old alike, toward a life of independence and success. With its diverse services, HKSB often works one on one to teach, educate, and rehabilitate thousands of clients according to their individual needs. The HKSB website provides information on the available services and programs, news and events, workshops and seminars, and vision resources. 

Lighthouse International Lighthouse International is a nonprofit organization dedicated to preserving vision and helping people of all ages overcome the challenges of vision loss through clinical services, education, research, and advocacy. The Lighthouse International website provides descriptions of available services and assistance, information about low vision and blindness, eye health information, descriptions of related research, and upcoming events. 

National Federation for the Blind (NFB) The NFB is the largest and most influential membership organization of blind people in the United States, improving blind people's lives through advocacy, education, research, technology, and programs encouraging independence and self-confidence. The NFB website provides information on the organization, information about vision loss, descriptions of products and technology, publications, and additional resources. 

Recording for the Blind & Dyslexic (RFB&D) The RFB&D works with leading publishers and technology innovators to bring accessible materials to individuals with visual and learning disabilities. The RFB&D website provides information about the organization, membership information, an audiobook catalog, and training and support materials. 

Vitiligo 

National Vitiligo Foundation The National Vitiligo Foundation website serves as a clearinghouse for information about vitiligo, for both people with vitiligo and the general public.

Von Hippel-Lindau (VHL) Syndrome 

Von Hippel-Lindau Family Alliance (VHLFA) The VHLFA provides information for families and physicians about the disorder, and local self-help support groups for families affected by VHL. The VHLFA website provides basic facts about VHL, information for caring for one’s health, descriptions of related research, professional information, and information about the organization. 

Williams Syndrome 

Williams Syndrome Foundation (WSF) The WSF seeks to create or enhance opportunities in education, housing, employment, and recreation for people who have Williams syndrome and other related or similar conditions by identifying, initiating, funding, and providing strategic guidance for major, long-range development projects, either by itself, or through cooperation with other organizations.

Americans for Better Care of the Dying (ABCD) ABCD is an organization that strives to improve end-of-life care by learning which social and political changes will lead to enduring, efficient, and effective programs. ABCD works with the public, clinicians, policymakers, and other end-of-life organizations to make change  happen. The ABCD website provides information on the organization, related news and events, descriptions of related public policy, links to related publications, and additional related links. 

Children's Hospice International (CHI) CHI provides a network of support and care for children with life-threatening conditions and their families. The hospice approach for children is a team effort that provides medical, psychological, social, and spiritual expertise and information in the United States and abroad. The goal of hospice care for children is enhancement of the quality of life each day. The CHI website provides information on the program, information on the organization, events and news, and links to additional resources. 

Hospice Patients Alliance (HPA) HPA is a nonprofit, tax-exempt, charitable organization that promotes quality hospice services and protects the rights of patients, their families and caregivers, the bereaved, and staff. The HPA provides information about hospice services; directly assists patients, families, and caregivers in resolving difficulties they may have with current hospice services; and promotes better quality hospice care throughout the United States of America. 

American Hospice Foundation The American Hospice Foundation is a nonprofit, tax-exempt organization that supports programs that serve the needs of terminally ill and grieving individuals of all ages. The American Hospice Foundation website provides information on the organization; links to related articles, publications, and products; links to additional resources; and a hospice report card. 

National Hospice and Palliative Care Organization (NHPCO) The NHPCO is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end-of-life care and expanding access to hospice care with the goal of profoundly enhancing the quality of life for people dying in America and their loved ones. The NHPCO website provides professional resources, information on quality partners, information on the organization, educational materials regarding end-of-life care, and a tool to find a hospice or palliative care program. 

Help the Hospices Help the Hospices is a charitable organization that supports hospice care throughout the United Kingdom.  The organization also has an international program that supports the development of hospice and palliative care worldwide, particularly in developing countries. The international program works with partners to present a global voice on international hospice and palliative care issues and provides resources to develop the capacity of hospice and palliative care services at national and local levels. The Help the Hospices website also contains a tool to locate hospice care in an international setting.

Americans for Better Care of the Dying (ABCD) ABCD is an organization that strives to improve end-of-life care by learning which social and political changes will lead to enduring, efficient, and effective programs. ABCD works with the public, clinicians, policymakers, and other end-of-life organizations to make change  happen. The ABCD website provides information on the organization, related news and events, descriptions of related public policy, links to related publications, and additional related links. 

Children's Hospice International (CHI) CHI provides a network of support and care for children with life-threatening conditions and their families. The hospice approach for children is a team effort that provides medical, psychological, social, and spiritual expertise and information in the United States and abroad. The goal of hospice care for children is enhancement of the quality of life each day. The CHI website provides information on the program, information on the organization, events and news, and links to additional resources. 

Hospice Patients Alliance (HPA) HPA is a nonprofit, tax-exempt, charitable organization that promotes quality hospice services and protects the rights of patients, their families and caregivers, the bereaved, and staff. The HPA provides information about hospice services; directly assists patients, families, and caregivers in resolving difficulties they may have with current hospice services; and promotes better quality hospice care throughout the United States of America. 

American Hospice Foundation The American Hospice Foundation is a nonprofit, tax-exempt organization that supports programs that serve the needs of terminally ill and grieving individuals of all ages. The American Hospice Foundation website provides information on the organization; links to related articles, publications, and products; links to additional resources; and a hospice report card. 

National Hospice and Palliative Care Organization (NHPCO) The NHPCO is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the United States. The organization is committed to improving end-of-life care and expanding access to hospice care with the goal of profoundly enhancing the quality of life for people dying in America and their loved ones. The NHPCO website provides professional resources, information on quality partners, information on the organization, educational materials regarding end-of-life care, and a tool to find a hospice or palliative care program. 

Help the Hospices Help the Hospices is a charitable organization that supports hospice care throughout the United Kingdom.  The organization also has an international program that supports the development of hospice and palliative care worldwide, particularly in developing countries. The international program works with partners to present a global voice on international hospice and palliative care issues and provides resources to develop the capacity of hospice and palliative care services at national and local levels. The Help the Hospices website also contains a tool to locate hospice care in an international setting.

American Association of Intellectual and Developmental Disabilities (AAIDD) AAIDD is the oldest and largest interdisciplinary organization of professionals and citizens concerned about intellectual and developmental disabilities. AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities. The AAIDD website provides information about the organization, a list of upcoming conferences and training opportunities, a catalog of related publications and policies, links to national resources, and links to AAIDD online communities. 

National Federation of Families for Children's Mental Health (FFCMH) The FFCMH is a national, parent-run, nonprofit organization focused on the needs of children and youth with emotional, behavioral, or mental disorders and their families. The FFCMH provides advocacy at the national level for the rights of children and youth with emotional, behavioral, and mental health challenges and their families; provides leadership and technical assistance to a nation-wide network of family-run organizations; and collaborates with family-run and other child-serving organizations to transform mental health care in America. The FFCMH website provides information on the organization, descriptions of current initiatives, links to related resources, and a listing of upcoming events. 

National Alliance For The Mentally Ill (NAMI) NAMI is a nonprofit, grassroots, self-help, support and advocacy organization of consumers, families, and friends of people with severe mental illnesses, such as schizophrenia, major depression, bipolar disorder, obsessive-compulsive disorder, and anxiety disorders. The NAMI website provides information on mental illnesses, information on medications, links to support and programs, and contact information for the local NAMI. 

The ARC of the United States The ARC of the United States advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. Together with their network of members and affiliated chapters, they improve systems of support and services, connect families, inspire communities, and influence public policy.

American Association of Intellectual and Developmental Disabilities (AAIDD) AAIDD is the oldest and largest interdisciplinary organization of professionals and citizens concerned about intellectual and developmental disabilities. AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities. The AAIDD website provides information about the organization, a list of upcoming conferences and training opportunities, a catalog of related publications and policies, links to national resources, and links to AAIDD online communities. 

National Federation of Families for Children's Mental Health (FFCMH) The FFCMH is a national, parent-run, nonprofit organization focused on the needs of children and youth with emotional, behavioral, or mental disorders and their families. The FFCMH provides advocacy at the national level for the rights of children and youth with emotional, behavioral, and mental health challenges and their families; provides leadership and technical assistance to a nation-wide network of family-run organizations; and collaborates with family-run and other child-serving organizations to transform mental health care in America. The FFCMH website provides information on the organization, descriptions of current initiatives, links to related resources, and a listing of upcoming events. 

National Alliance For The Mentally Ill (NAMI) NAMI is a nonprofit, grassroots, self-help, support and advocacy organization of consumers, families, and friends of people with severe mental illnesses, such as schizophrenia, major depression, bipolar disorder, obsessive-compulsive disorder, and anxiety disorders. The NAMI website provides information on mental illnesses, information on medications, links to support and programs, and contact information for the local NAMI. 

The ARC of the United States The ARC of the United States advocates for the rights and full participation of all children and adults with intellectual and developmental disabilities. Together with their network of members and affiliated chapters, they improve systems of support and services, connect families, inspire communities, and influence public policy.

Children's Organ Transplant Association (COTA) The COTA is a charitable organization that exists to assist patients who require a life-saving organ, bone marrow, cord blood, or stem cell transplant. The COTA website provides information about the organization, information specifically targeted at transplant families and transplant professionals, and resources to donate to the organization. 

LifeGift Organ Donation Center LifeGift is a nonprofit organ procurement organization that recovers organs and tissue for individuals needing transplants in 109 Texas counties in North, Southeast, and West Texas. The LifeGift website provides information about the organization, donation facts, outreach materials, information on workplace partners, and information specifically targeted at donor families and health care professionals. 

OrganDonor.gov Provided by the Department of Health and Human Services, OrganDonor.gov provides information and resources on organ donation and transplantation issues.  The OrganDonor.gov website provides information on how to be a donor, basic information about donation and transplantation, recommendations to reduce risk, and descriptions of current research. 

United Network for Organ Sharing (UNOS) UNOS is a private, nonprofit organization dedicated to saving lives by marshalling the medical, scientific, public policy, and technological resources needed to facilitate every organ transplant performed in the United States. The UNOS website provides information on the organization, information and resources related to donation and transplantation, descriptions of available services and capabilities, and contact information for the organization.

Children's Organ Transplant Association (COTA) The COTA is a charitable organization that exists to assist patients who require a life-saving organ, bone marrow, cord blood, or stem cell transplant. The COTA website provides information about the organization, information specifically targeted at transplant families and transplant professionals, and resources to donate to the organization. 

LifeGift Organ Donation Center LifeGift is a nonprofit organ procurement organization that recovers organs and tissue for individuals needing transplants in 109 Texas counties in North, Southeast, and West Texas. The LifeGift website provides information about the organization, donation facts, outreach materials, information on workplace partners, and information specifically targeted at donor families and health care professionals. 

OrganDonor.gov Provided by the Department of Health and Human Services, OrganDonor.gov provides information and resources on organ donation and transplantation issues.  The OrganDonor.gov website provides information on how to be a donor, basic information about donation and transplantation, recommendations to reduce risk, and descriptions of current research. 

United Network for Organ Sharing (UNOS) UNOS is a private, nonprofit organization dedicated to saving lives by marshalling the medical, scientific, public policy, and technological resources needed to facilitate every organ transplant performed in the United States. The UNOS website provides information on the organization, information and resources related to donation and transplantation, descriptions of available services and capabilities, and contact information for the organization.

Bright Futures Bright Futures is a national health-promotion and disease-prevention initiative that addresses children's health needs in the context of family and community. The Bright Futures website provides practices guides, presentations, handouts, and newsletters; listings of state programs; information for health care professionals; guides and resources for families; and toolkits, resource kits, and training and implementation materials for clinical practices. 

Champions for Inclusive Communities (ChampionsInC) ChampionsInC was a national center designed to support communities in organizing services for families of children and youth with special health care needs. The ChampionsInC project ended in June, 2010. The ChampionsInC website provides links to related fact sheets, a state-level toolkit, and state community reports. 

Healthfinder Healthfinder is a free gateway to reliable consumer health and human services information developed by the Department of Health and Human Services. Healthfinder can lead individuals to selected online publications, clearinghouses, databases, websites, and support and self-help groups, as well as the government agencies and nonprofit organizations that produce reliable information for the public. 

Lab Tests Online Lab Tests Online is produced by the American Association of Clinical Chemistry (AACC) and is the result of a collaboration of professional societies representing the laboratory community. The Lab Tests Online website provides information to help patients or family caregivers better understand the many clinical lab tests that are part of routine care and the diagnosis and treatment of a broad range of conditions and diseases. 

MEDLinePlus MEDLinePlus is a service of the National Library of Medicine at the National Institutes of Health that provides information about diseases, conditions, and wellness issues in an understandable language. MedlinePlus offers reliable, up-to-date health information for free. 

National Center for Health Statistics (NCHS) The NCHS is a part of the Department of Health and Human Services, Centers for Disease Control and Prevention (CDC), that works closely with other federal agencies, researchers, and academic institutions to provide data and information on health status, lifestyle, exposure to unhealthy influences, the onset and diagnosis of illness and disability, and the use of health care. 

National Institutes of Health (NIH) NIH is part of the Department of Health and Human Services and is the nation's largest medical research agency. NIH strives to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce the burdens of illness and disability. 

Bright Futures Bright Futures is a national health-promotion and disease-prevention initiative that addresses children's health needs in the context of family and community. The Bright Futures website provides practices guides, presentations, handouts, and newsletters; listings of state programs; information for health care professionals; guides and resources for families; and toolkits, resource kits, and training and implementation materials for clinical practices. 

Champions for Inclusive Communities (ChampionsInC) ChampionsInC was a national center designed to support communities in organizing services for families of children and youth with special health care needs. The ChampionsInC project ended in June, 2010. The ChampionsInC website provides links to related fact sheets, a state-level toolkit, and state community reports. 

Healthfinder Healthfinder is a free gateway to reliable consumer health and human services information developed by the Department of Health and Human Services. Healthfinder can lead individuals to selected online publications, clearinghouses, databases, websites, and support and self-help groups, as well as the government agencies and nonprofit organizations that produce reliable information for the public. 

Lab Tests Online Lab Tests Online is produced by the American Association of Clinical Chemistry (AACC) and is the result of a collaboration of professional societies representing the laboratory community. The Lab Tests Online website provides information to help patients or family caregivers better understand the many clinical lab tests that are part of routine care and the diagnosis and treatment of a broad range of conditions and diseases. 

MEDLinePlus MEDLinePlus is a service of the National Library of Medicine at the National Institutes of Health that provides information about diseases, conditions, and wellness issues in an understandable language. MedlinePlus offers reliable, up-to-date health information for free. 

National Center for Health Statistics (NCHS) The NCHS is a part of the Department of Health and Human Services, Centers for Disease Control and Prevention (CDC), that works closely with other federal agencies, researchers, and academic institutions to provide data and information on health status, lifestyle, exposure to unhealthy influences, the onset and diagnosis of illness and disability, and the use of health care. 

National Institutes of Health (NIH) NIH is part of the Department of Health and Human Services and is the nation's largest medical research agency. NIH strives to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce the burdens of illness and disability. 

MediLexicon MediLexicon is a dictionary of over 140,000 medical, pharmaceutical, biomedical, and health care acronyms and abbreviations. The MediLexicon website also contains medical news and a search tool for medical, pharmaceutical, or health care professionals. 

MediLexicon MediLexicon is a dictionary of over 140,000 medical, pharmaceutical, biomedical, and health care acronyms and abbreviations. The MediLexicon website also contains medical news and a search tool for medical, pharmaceutical, or health care professionals. 

TRICARE The TRICARE website is a comprehensive source of information for TRICARE beneficiaries and those who assist them. In addition to information about all TRICARE benefits, programs, and services, it provides contact information for TRICARE regional contractors, TRICARE Service Centers, and Military Treatment Facilities. TRICARE offers Beneficiary Counseling and Assistance Coordinator (BCAC) and Debt Collection Assistance Officer (DCAO) assistance to beneficiaries who cannot access specific TRICARE information through other means or cannot resolve specific concerns through normal channels. 

TRICARE Beneficiary Counseling and Assistance Coordinator (BCAC) All TRICARE Regional Offices and most Military Treatment Facilities (MTFs) are staffed with BCACs whose role is to serve as the beneficiary's advocate and troubleshooter. BCACs provide information, guidance, and assistance on benefit options, TRICARE Prime enrollment, special authorizations, status of claims and eligibility, and assistance with referrals and appointments. The BCAC will interface with the MTF staff, managed care support contractors, and claims processors to resolve beneficiary concerns and facilitate answers to questions for problems that cannot be resolved through normal channels. In the event that beneficiaries have been unable to resolve concerns or disagree with decisions related to their benefits, the BCAC can provide information about the TRICARE appeals process. 

TRICARE Computer/Electronic Accommodations Program (CAP) The CAP was established to improve accessibility for people with disabilities throughout the Department of Defense (DoD) by providing assistive technology and accommodations to ensure people with disabilities have equal access to the information environment and opportunities in DoD and the federal government. 

TRICARE Debt Collection Assistance Officers (DCAO) TRICARE has a DCAO assigned to TRICARE Regional Offices and MTFs worldwide to help beneficiaries understand and get assistance with debt collection problems related to TRICARE. Individuals who have received a notice from a collection agency or a negative credit report because of a medical or dental bill should be referred to the nearest DCAO. The DCAO will ask for documentation including debt collection letters, TRICARE Explanation of Benefits (EoB), and bills from providers. The DCAO will then research the claim, provide a written resolution to the collection problem, and notify collection agencies that action is being taken.  

TRICARE Extended Care Health Option (ECHO) ECHO is a supplemental program to the basic TRICARE program. ECHO provides financial assistance for an integrated set of services and supplies to eligible active duty family members (including family members of activated National Guard or Reserve service members). The ECHO website provides information on who may qualify for the program, a description of the benefits available, cost and coverage limits, facts about ECHO home health care, and information on the autism services demonstration. 

TRICARE National Guard and Reserve Members and their Families The TRICARE National Guard and Reserve Members and their Families section of the TRICARE website provides information eligibility for the various TRICARE programs, how eligibility changes during periods of activation and deactivation, descriptions of the various TRICARE programs, links to related flyers and handbooks, and contact information for the Defense Manpower Data Center Support Office. 

MyTRICARE MyTRICARE is a new TRICARE benefit that provides beneficiaries and sponsors with 24-hour online access to check the status of TRICARE claims; check maximum out-of-pocket expenses and Other Health Insurance (OHI) status; send confidential, secure e-mail and receive a quick response; view and print TRICARE Explanation of Benefits; check TRICARE eligibility; locate a physician; and find answers to frequently asked questions and links to other resources. 

TRICARE University TRICARE University is the official website of the Customer Communications Branch, Communications and Customer Service Directorate, TRICARE Management Activity.  The TRICARE University website provides links to resources, participant training guides, participant training guides for overseas personnel, answers to frequently asked questions, and a link to the branch’s newsletter.

TRICARE The TRICARE website is a comprehensive source of information for TRICARE beneficiaries and those who assist them. In addition to information about all TRICARE benefits, programs, and services, it provides contact information for TRICARE regional contractors, TRICARE Service Centers, and Military Treatment Facilities. TRICARE offers Beneficiary Counseling and Assistance Coordinator (BCAC) and Debt Collection Assistance Officer (DCAO) assistance to beneficiaries who cannot access specific TRICARE information through other means or cannot resolve specific concerns through normal channels. 

TRICARE Beneficiary Counseling and Assistance Coordinator (BCAC) All TRICARE Regional Offices and most Military Treatment Facilities (MTFs) are staffed with BCACs whose role is to serve as the beneficiary's advocate and troubleshooter. BCACs provide information, guidance, and assistance on benefit options, TRICARE Prime enrollment, special authorizations, status of claims and eligibility, and assistance with referrals and appointments. The BCAC will interface with the MTF staff, managed care support contractors, and claims processors to resolve beneficiary concerns and facilitate answers to questions for problems that cannot be resolved through normal channels. In the event that beneficiaries have been unable to resolve concerns or disagree with decisions related to their benefits, the BCAC can provide information about the TRICARE appeals process. 

TRICARE Computer/Electronic Accommodations Program (CAP) The CAP was established to improve accessibility for people with disabilities throughout the Department of Defense (DoD) by providing assistive technology and accommodations to ensure people with disabilities have equal access to the information environment and opportunities in DoD and the federal government. 

TRICARE Debt Collection Assistance Officers (DCAO) TRICARE has a DCAO assigned to TRICARE Regional Offices and MTFs worldwide to help beneficiaries understand and get assistance with debt collection problems related to TRICARE. Individuals who have received a notice from a collection agency or a negative credit report because of a medical or dental bill should be referred to the nearest DCAO. The DCAO will ask for documentation including debt collection letters, TRICARE Explanation of Benefits (EoB), and bills from providers. The DCAO will then research the claim, provide a written resolution to the collection problem, and notify collection agencies that action is being taken.  

TRICARE Extended Care Health Option (ECHO) ECHO is a supplemental program to the basic TRICARE program. ECHO provides financial assistance for an integrated set of services and supplies to eligible active duty family members (including family members of activated National Guard or Reserve service members). The ECHO website provides information on who may qualify for the program, a description of the benefits available, cost and coverage limits, facts about ECHO home health care, and information on the autism services demonstration. 

TRICARE National Guard and Reserve Members and their Families The TRICARE National Guard and Reserve Members and their Families section of the TRICARE website provides information eligibility for the various TRICARE programs, how eligibility changes during periods of activation and deactivation, descriptions of the various TRICARE programs, links to related flyers and handbooks, and contact information for the Defense Manpower Data Center Support Office. 

MyTRICARE MyTRICARE is a new TRICARE benefit that provides beneficiaries and sponsors with 24-hour online access to check the status of TRICARE claims; check maximum out-of-pocket expenses and Other Health Insurance (OHI) status; send confidential, secure e-mail and receive a quick response; view and print TRICARE Explanation of Benefits; check TRICARE eligibility; locate a physician; and find answers to frequently asked questions and links to other resources. 

TRICARE University TRICARE University is the official website of the Customer Communications Branch, Communications and Customer Service Directorate, TRICARE Management Activity.  The TRICARE University website provides links to resources, participant training guides, participant training guides for overseas personnel, answers to frequently asked questions, and a link to the branch’s newsletter.