Assistance Dogs of America - Assistance Dogs of America, Inc. locates, trains and places highly skilled service and therapy dogs with disabled adults and children to help them become more independent. ADAI is dedicated to training 'throwaway' dogs rescued from animal shelters, and/or dogs donated by pet owners.

Canine Companions for Independence - Canine Companions for Independence (CCI) is a non-profit organization that enhances the lives of people with disabilities by providing highly-trained assistance dogs and ongoing support to ensure quality partnerships. CCI also provides dogs to veterans with disabilities resulting from military service. Visit http://www.cci.org/veterans

Commonly Asked Questions about Service Animals in Places of Business - Commonly Asked Questions about Service Animals in Places of Business.

Dogs for the Deaf - Their mission is to rescue and professionally train dogs to assist people and enhance their lives.

Patriot Service Dogs, Inc. - Service dogs for disabled veterans.

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 - Assistance Dogs of America, Inc. locates, trains and places highly skilled service and therapy dogs with disabled adults and children to help them become more independent. ADAI is dedicated to training 'throwaway' dogs rescued from animal shelters, and/or dogs donated by pet owners.

Canine Companions for Independence - Canine Companions for Independence (CCI) is a non-profit organization that enhances the lives of people with disabilities by providing highly-trained assistance dogs and ongoing support to ensure quality partnerships. CCI also provides dogs to veterans with disabilities resulting from military service. Visit http://www.cci.org/veterans

Commonly Asked Questions about Service Animals in Places of Business - Commonly Asked Questions about Service Animals in Places of Business.

Dogs for the Deaf - Their mission is to rescue and professionally train dogs to assist people and enhance their lives.

Patriot Service Dogs, Inc. - Service dogs for disabled veterans.

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 - The premier source for information on assistive technology, sponsored by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education.

Assistive Technology 101 (UCPnet) - Excellent article by Susan Goodman, esq. about assistive technology, including sources for obtaining such assistance.

Assistive Technology for Kids with Mild Disabilities - Kidsource provides to parents an easy to read article about assistive technology for children.

At Access - AT ACCESS: a network of community-based resource centers dedicated to providing information and support services to children and adults with disabilities, and increasing their use of standard, assistive, and information technologies. Centers can be found all across the country.  Links to 60 vendors of adaptive equipment, FAQ, web accessible design, success stories, and related sites.

Closing the Gap - Closingthegap.com offers a newsletter, over 2,000 computer-related products available for children and adults with special needs and much more.

Computer/Electronic Accommodations Program - The Computer/Electronic Accommodations Program (CAP) provides assistive technology accommodations and services to persons with disabilities at the Department of Defense (DoD) and other federal agencies at no cost to the requesting organization. CAP's mission is to ensure people with disabilities have equal access to the information environment and opportunities in the DoD and throughout the federal government. CAP is now the federal government's centrally funded accommodations program. In October 2000, CAP was granted the authority to provide assistive technology, devices, and services to any department or agency in the federal government upon the request of the head of the agency.

Do-IT Program - Offers programs to promote the use of electronic and information technology to maximize the independence, productivity and participation of people with disabilities.

EASI (Easy Access to Software Information) - EASI is a provider of Online Training on Accessible Information Technology for Persons with Disabilities.

Family Guide to Assistive Technology - This Guide is intended to help parents learn more about assistive technology and how it can help their children. The Guide includes tips for getting started, ideas about where to look for money, and suggestions for what to do when applying for funding. Places to contact for more information or to find software and equipment are listed in the Appendix at the end of the Guide.

National Center for Accessible Media (NCAM) - The CPB/WGBH National Center for Accessible Media (NCAM) is a research and development facility dedicated to the issues of media and information technology for people with disabilities in their homes, schools, workplaces, and communities.

Providing Education By Bringing Learning Environments to Students (PEBBLES)  - A national program that uses robots to give students who are confined to hospitals a physical presence in their schools.

Trace Research and Development 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.

Technical Assistance Project - Each state operates an Assistive Technology project under the Assistive Technology Act of 1998. These projects focus on various activities such as provision of resource information, systems change and advocacy activities, loan programs, lending libraries, and recycling programs. The RESNA Technical Assistance Project can provide contact information for your state's program.

Universally Designed Technology in Schools (Free Online Training) - This training provides an overview of universally designed technology that can give students with disabilities equal access to the school curriculum.

Abledata - The premier source for information on assistive technology, sponsored by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education.

Assistive Technology 101 (UCPnet) - Excellent article by Susan Goodman, esq. about assistive technology, including sources for obtaining such assistance.

Assistive Technology for Kids with Mild Disabilities - Kidsource provides to parents an easy to read article about assistive technology for children.

At Access - AT ACCESS: a network of community-based resource centers dedicated to providing information and support services to children and adults with disabilities, and increasing their use of standard, assistive, and information technologies. Centers can be found all across the country.  Links to 60 vendors of adaptive equipment, FAQ, web accessible design, success stories, and related sites.

Closing the Gap - Closingthegap.com offers a newsletter, over 2,000 computer-related products available for children and adults with special needs and much more.

Computer/Electronic Accommodations Program - The Computer/Electronic Accommodations Program (CAP) provides assistive technology accommodations and services to persons with disabilities at the Department of Defense (DoD) and other federal agencies at no cost to the requesting organization. CAP's mission is to ensure people with disabilities have equal access to the information environment and opportunities in the DoD and throughout the federal government. CAP is now the federal government's centrally funded accommodations program. In October 2000, CAP was granted the authority to provide assistive technology, devices, and services to any department or agency in the federal government upon the request of the head of the agency.

Do-IT Program - Offers programs to promote the use of electronic and information technology to maximize the independence, productivity and participation of people with disabilities.

EASI (Easy Access to Software Information) - EASI is a provider of Online Training on Accessible Information Technology for Persons with Disabilities.

Family Guide to Assistive Technology - This Guide is intended to help parents learn more about assistive technology and how it can help their children. The Guide includes tips for getting started, ideas about where to look for money, and suggestions for what to do when applying for funding. Places to contact for more information or to find software and equipment are listed in the Appendix at the end of the Guide.

National Center for Accessible Media (NCAM) - The CPB/WGBH National Center for Accessible Media (NCAM) is a research and development facility dedicated to the issues of media and information technology for people with disabilities in their homes, schools, workplaces, and communities.

Providing Education By Bringing Learning Environments to Students (PEBBLES)  - A national program that uses robots to give students who are confined to hospitals a physical presence in their schools.

Trace Research and Development 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.

Technical Assistance Project - Each state operates an Assistive Technology project under the Assistive Technology Act of 1998. These projects focus on various activities such as provision of resource information, systems change and advocacy activities, loan programs, lending libraries, and recycling programs. The RESNA Technical Assistance Project can provide contact information for your state's program.

Universally Designed Technology in Schools (Free Online Training) - This training provides an overview of universally designed technology that can give students with disabilities equal access to the school curriculum.

National Caregivers Association - NFCA is a grass roots organization created to educate, support, empower and speak up for the millions of Americans who care for chronically ill, aged or disabled loved ones.

National Caregivers Association - NFCA is a grass roots organization created to educate, support, empower and speak up for the millions of Americans who care for chronically ill, aged or disabled loved ones.

AboutSmiles.com - Oral Health for Children and Adults with Disabilities.

American Academy of Pediatrics National Center of Medical Home Initiatives for Children with Special Needs - The National Center of Medical Home Initiatives for Children with Special Needs provides support to physicians, families, and other medical and non-medical providers who care for children with special needs so that they have access to a medical home.

American Academy of Pediatrics - The mission of the American Academy of Pediatrics is to attain optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults.

March of Dimes - March of Dimes offers information on a variety of birth defects and genetics.  They have comprehensive coverage for pregnancy through caring for your newborn.

MedWeb - Provides the user with all information that is available on disabilities-guides, sites, databases, documents, electronic newsletters, journals, etc.

National Association of Children's Hospitals and Related Institutions - Search for hospital programs or services, state Medicaid fact sheets, and child advocacy.

National Institute of Dental and Craniofacial Research - This site has practical oral care publications for individuals with special needs.

National Organization of Rare Disorders - Search the largest database of understandable information on rare disorders. Over 1,100 diseases are included. Also more than 2,000 support groups, voluntary health organizations, and non-profit agencies that help people affected by rare diseases.

Pathways Awareness Foundation - A national non-profit organization dedicated to raising awareness about the benefit of early detection and early therapy for children with physical movement differences.  This website, designed for both parents and professionals, contains valuable information about children’s physical development including a growth and development chart where you can track a child’s physical, play and speech milestones from 3 to 15 months.

Trust For America's Health - Trust For America's Health offers a report titled "Birth Defects Tracking and Prevention: Too Many States Are Not Making the Grade" that gives each of the 50 states, plus the District of Columbia and Puerto Rico, a letter grade based on their efforts to monitor and research birth defects.

AboutSmiles.com - Oral Health for Children and Adults with Disabilities.

American Academy of Pediatrics National Center of Medical Home Initiatives for Children with Special Needs - The National Center of Medical Home Initiatives for Children with Special Needs provides support to physicians, families, and other medical and non-medical providers who care for children with special needs so that they have access to a medical home.

American Academy of Pediatrics - The mission of the American Academy of Pediatrics is to attain optimal physical, mental, and social health and well-being for all infants, children, adolescents, and young adults.

March of Dimes - March of Dimes offers information on a variety of birth defects and genetics.  They have comprehensive coverage for pregnancy through caring for your newborn.

MedWeb - Provides the user with all information that is available on disabilities-guides, sites, databases, documents, electronic newsletters, journals, etc.

National Association of Children's Hospitals and Related Institutions - Search for hospital programs or services, state Medicaid fact sheets, and child advocacy.

National Institute of Dental and Craniofacial Research - This site has practical oral care publications for individuals with special needs.

National Organization of Rare Disorders - Search the largest database of understandable information on rare disorders. Over 1,100 diseases are included. Also more than 2,000 support groups, voluntary health organizations, and non-profit agencies that help people affected by rare diseases.

Pathways Awareness Foundation - A national non-profit organization dedicated to raising awareness about the benefit of early detection and early therapy for children with physical movement differences.  This website, designed for both parents and professionals, contains valuable information about children’s physical development including a growth and development chart where you can track a child’s physical, play and speech milestones from 3 to 15 months.

Trust For America's Health - Trust For America's Health offers a report titled "Birth Defects Tracking and Prevention: Too Many States Are Not Making the Grade" that gives each of the 50 states, plus the District of Columbia and Puerto Rico, a letter grade based on their efforts to monitor and research birth defects.

Acid Maltase

The Acid Maltase Deficiency Association (AMDA) - The Acid Maltase Deficiency Association, AMDA, was formed to assist in funding research 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

Acidemia Organic Association - The Organic Acidemia Association is a voluntary not-for-profit self-help organization dedicated to providing information and support to families of children with inborn errors of metabolism. The Organic Acidemia Association provides information to affected families and health care professionals across the country and internationally.

Acoustic Neuroma

The Acoustic Neuroma Association - The Acoustic Neuroma Association 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 - The National Adrenal Diseases Foundation is a non-profit organization dedicated to providing support, information and education to individuals having Addison's disease as well as other diseases of the adrenal glands.

Agenesis Of The Corpus Collosum

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 - Provides information and comfort to families and friends of girls diagnosed with Aicardi Syndrome.

Albinism Hypopigmentation

NOAH - NOAH is a U.S. 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 - The mission of the National Alopecia Areata Foundation (NAAF) is to support research to find a cure or acceptable treatment for alopecia areata, to support those with the disease, and to educate the public about alopecia areata.

Alpha-1-Antitrypsin (AAT) Deficiency

ALPHA-1 National Association - Clearinghouse of information, support and education for people bearing Alpha-1 Antitrypsin Deficiency

Alstrom Syndrome

Alstrom Syndrome International - The mission of Alstrom Syndrome International (ASI) is to provide support, information, and coordination world-wide to families and professionals in order to treat and cure Alström Syndrome. ASI can lend support to patients, families, and physicians confronting the difficulties posed by Alström Syndrome.

Anophthalmia

International Children's Network - ican (International Children's Anophthalmia Network) is a parent support group for families with a child with anophthalmia or microphthalmia.

Angelman Syndrome

Angelman Syndrome Foundation - Information about ASF

Anorectal Malformations

Pull-Thru Network - The Pull-thru Network 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.

Anorexia Nervosa

National Eating Disorder Association - The National Eating Disorders Association (NEDA) is a not-for-profit 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.

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 MDS International Foundation, Inc - The Aplastic Anemia & MDS International Foundation 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

C.H.E.R.A.B. Foundation, Inc. - Provides communication help, education and research.

The Childhood Apraxia of Speech Association - A 501(c)(3) non-profit 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 (NIH) - The mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world.

Arthritis

Arthritis Foundation - Information about arthritis.

National Institute of Arthritis and Musculoskeletal and Kin Diseases Information Clearinghouse (NIAMS) -  The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases.

Asthma & Allergy

Allergy & Asthma Network; Mothers of Asthmatics (AANMA) - AANMA is a national nonprofit network of families whose desire is to overcome, not cope with, allergies and asthma.

Asthma and Allergy Foundation of America - Helps with education, advocacy, research, publications, chapters and support groups. Get quick facts about asthma, allergies (including food allergies) and more!

Ataxia

Ataxia - The National Ataxia Foundation is a nonprofit organization with the primary mission of encouraging and supporting research into Hereditary Ataxia, a group of neurological disorders which are chronic and progressive conditions affecting coordination.

Ataxia Telangiectasia

Ataxia Telangiectasia - T Children's Project 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)

Children & Adults with ADD (CHADD) - CHADD has over 16,000 members in 200 local chapters throughout the U.S. that offer support for individuals, parents, teachers, professionals, and others.

National Attention Deficit Disorder Association - The mission of ADDA is to provide information, resources and networking to adults with AD/HD and to the professionals who work with them.

Autism

Autism National Committee - Founded in 1990 to protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behavior.

Autism – NIH Study - This monograph by the National Institutes of Health (NIH) describes how scientists have come one step closer to determining the genetic basis for autism. The researchers have identified regions of four chromosomes that appear to be linked with the disorder.

Autism Society of America - The mission of the Autism Society of America is to promote lifelong access and opportunity for all individuals within the autism spectrum, and their families, to be fully participating, included members of their community. Education, advocacy at state and federal levels, active public awareness and the promotion of research form the cornerstones of ASA's efforts to carry forth its mission.

Autism Services North - A TRICARE approved Applied Behavior Analysis (ABA) provider serving military families in TRICARE's North, West and South regions.

Cleveland Clinic Children's Hospital Center for Autism - Located in Cleveland, Ohio, the Center for Autism offers behavioral health services, diagnostic services, workshops and more.

Educating Children With Autism - National Academy of Education report on educating children with autism.

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 40 outpatient clinics; neurobehavioral, rehabilitation, and pediatric feeding disorders inpatient units; plus several home and community programs providing services to assist families.

Operation Autism; A Resource Guide for Military Families - Operation Autism directly supports U.S. 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. Also available is A Guide for Military Families, the purpose of which is to give military families touched by autism the tools and access to information they need to navigate their unique life journeys.

Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) -  TEACCH is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders.

The Dan Marino Foundation - The mission of The Dan Marino Foundation is to support integrated treatment programs for children with chronic illnesses and developmental disabilities, so they can lead healthier and happier lives.

The Doug Flutie Jr. Foundation for Autism, Inc. - The Foundation's mission is to aid financially disadvantaged families who need assistance in caring for their children with autism; to fund education and research into the causes and consequences of childhood autism; and to serve as a clearinghouse and communications center for new programs and services developed for individuals with autism.

Yale Program for Autism, Prader-Willi Syndrome, and Williams Syndrome - 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

Autoimmune Disorders - Patient Information on more than 56 autoimmune related diseases.

Acid Maltase

The Acid Maltase Deficiency Association (AMDA) - The Acid Maltase Deficiency Association, AMDA, was formed to assist in funding research 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

Acidemia Organic Association - The Organic Acidemia Association is a voluntary not-for-profit self-help organization dedicated to providing information and support to families of children with inborn errors of metabolism. The Organic Acidemia Association provides information to affected families and health care professionals across the country and internationally.

Acoustic Neuroma

The Acoustic Neuroma Association - The Acoustic Neuroma Association 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 - The National Adrenal Diseases Foundation is a non-profit organization dedicated to providing support, information and education to individuals having Addison's disease as well as other diseases of the adrenal glands.

Agenesis Of The Corpus Collosum

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 - Provides information and comfort to families and friends of girls diagnosed with Aicardi Syndrome.

Albinism Hypopigmentation

NOAH - NOAH is a U.S. 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 - The mission of the National Alopecia Areata Foundation (NAAF) is to support research to find a cure or acceptable treatment for alopecia areata, to support those with the disease, and to educate the public about alopecia areata.

Alpha-1-Antitrypsin (AAT) Deficiency

ALPHA-1 National Association - Clearinghouse of information, support and education for people bearing Alpha-1 Antitrypsin Deficiency

Alstrom Syndrome

Alstrom Syndrome International - The mission of Alstrom Syndrome International (ASI) is to provide support, information, and coordination world-wide to families and professionals in order to treat and cure Alström Syndrome. ASI can lend support to patients, families, and physicians confronting the difficulties posed by Alström Syndrome.

Anophthalmia

International Children's Network - ican (International Children's Anophthalmia Network) is a parent support group for families with a child with anophthalmia or microphthalmia.

Angelman Syndrome

Angelman Syndrome Foundation - Information about ASF

Anorectal Malformations

Pull-Thru Network - The Pull-thru Network 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.

Anorexia Nervosa

National Eating Disorder Association - The National Eating Disorders Association (NEDA) is a not-for-profit 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.

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 MDS International Foundation, Inc - The Aplastic Anemia & MDS International Foundation 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

C.H.E.R.A.B. Foundation, Inc. - Provides communication help, education and research.

The Childhood Apraxia of Speech Association - A 501(c)(3) non-profit 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 (NIH) - The mission of NINDS is to reduce the burden of neurological disease - a burden borne by every age group, by every segment of society, by people all over the world.

Arthritis

Arthritis Foundation - Information about arthritis.

National Institute of Arthritis and Musculoskeletal and Kin Diseases Information Clearinghouse (NIAMS) -  The mission of the National Institute of Arthritis and Musculoskeletal and Skin Diseases is to support research into the causes, treatment, and prevention of arthritis and musculoskeletal and skin diseases, the training of basic and clinical scientists to carry out this research, and the dissemination of information on research progress in these diseases.

Asthma & Allergy

Allergy & Asthma Network; Mothers of Asthmatics (AANMA) - AANMA is a national nonprofit network of families whose desire is to overcome, not cope with, allergies and asthma.

Asthma and Allergy Foundation of America - Helps with education, advocacy, research, publications, chapters and support groups. Get quick facts about asthma, allergies (including food allergies) and more!

Ataxia

Ataxia - The National Ataxia Foundation is a nonprofit organization with the primary mission of encouraging and supporting research into Hereditary Ataxia, a group of neurological disorders which are chronic and progressive conditions affecting coordination.

Ataxia Telangiectasia

Ataxia Telangiectasia - T Children's Project 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)

Children & Adults with ADD (CHADD) - CHADD has over 16,000 members in 200 local chapters throughout the U.S. that offer support for individuals, parents, teachers, professionals, and others.

National Attention Deficit Disorder Association - The mission of ADDA is to provide information, resources and networking to adults with AD/HD and to the professionals who work with them.

Autism

Autism National Committee - Founded in 1990 to protect and advance the human rights and civil rights of all persons with autism, Pervasive Developmental Disorder, and related differences of communication and behavior.

Autism – NIH Study - This monograph by the National Institutes of Health (NIH) describes how scientists have come one step closer to determining the genetic basis for autism. The researchers have identified regions of four chromosomes that appear to be linked with the disorder.

Autism Society of America - The mission of the Autism Society of America is to promote lifelong access and opportunity for all individuals within the autism spectrum, and their families, to be fully participating, included members of their community. Education, advocacy at state and federal levels, active public awareness and the promotion of research form the cornerstones of ASA's efforts to carry forth its mission.

Autism Services North - A TRICARE approved Applied Behavior Analysis (ABA) provider serving military families in TRICARE's North, West and South regions.

Cleveland Clinic Children's Hospital Center for Autism - Located in Cleveland, Ohio, the Center for Autism offers behavioral health services, diagnostic services, workshops and more.

Educating Children With Autism - National Academy of Education report on educating children with autism.

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 40 outpatient clinics; neurobehavioral, rehabilitation, and pediatric feeding disorders inpatient units; plus several home and community programs providing services to assist families.

Operation Autism; A Resource Guide for Military Families - Operation Autism directly supports U.S. 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. Also available is A Guide for Military Families, the purpose of which is to give military families touched by autism the tools and access to information they need to navigate their unique life journeys.

Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH) -  TEACCH is an evidence-based service, training, and research program for individuals of all ages and skill levels with autism spectrum disorders.

The Dan Marino Foundation - The mission of The Dan Marino Foundation is to support integrated treatment programs for children with chronic illnesses and developmental disabilities, so they can lead healthier and happier lives.

The Doug Flutie Jr. Foundation for Autism, Inc. - The Foundation's mission is to aid financially disadvantaged families who need assistance in caring for their children with autism; to fund education and research into the causes and consequences of childhood autism; and to serve as a clearinghouse and communications center for new programs and services developed for individuals with autism.

Yale Program for Autism, Prader-Willi Syndrome, and Williams Syndrome - 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

Autoimmune Disorders - Patient Information on more than 56 autoimmune related diseases.

Balance and Dizziness Disorders

EAR Foundation - The Ear Foundation web site 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

The Barth Syndrome Foundation, Inc. - The foundation's mission is to guide the search for a cure, to educate and support physicians and to create a caring community for affected families.

Batten Disease

Batten Disease Support and Research Association - An international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as Batten Disease.

Beckwith-Wiedemann Syndrome

Beckwith-Wiedemann Support Network (BWSN) - The BWSN is a non-profit 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 - A not-for-profit organization dedicated exclusively to serving the needs of persons facing a bone marrow, blood stem cell or umbilical cord blood transplant.

Brain Injury

Brain Injury Association of America - By acting as a clearinghouse of community service information and resources, participating in legislative advocacy, facilitating prevention awareness, hosting educational programs and encouraging research, the Brain Injury Association of America and its affiliates reach the millions of individuals living with the "silent epidemic" of brain injury.

Brain Tumor

The Brain Tumor Society - This society exists to find a cure for brain tumors. It strives to improve the quality of life of brain tumor patients and their families. It disseminates educational information and provides access to psycho-social support. It raises funds to advance carefully selected scientific research projects, improve clinical care and find a cure.

Children's Brain Tumor Foundation - This foundation was founded by families, friends and physicians of children with brain tumors. The foundation's mission is to raise funds for scientific research and heighten public awareness of this most devastating disease and to improve prognosis and quality of life for those that are affected.

Burns

Phoenix Society for Burn Survivors - For over 25 years, The Phoenix Society for Burn Survivors, Inc. has been connecting burn survivors, their loved ones, and burn care professionals with valuable resources.

Cancer

American Cancer Society - 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.

Candlelighters Childhood Cancer Foundation -  This foundation is committed to their mission of providing support, education and advocacy for children and adolescents with cancer, survivors of childhood/adolescent cancer, their families and the professionals who care for them.

National Childhood Cancer Foundation (CureSearch) - CureSearch unites the world's largest childhood cancer research organization, the Children's Oncology Group, and the National Childhood Cancer Foundation through their shared mission to cure childhood cancer.

Celiac Disease

Celiac Disease Foundation (CDF) - CDF provides support, information and assistance to people affected by Celiac Disease/Dermatitis Herpetiformis (CD/DH).

Celiac Sprue Assocation - 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.

Cerebral Palsy

Kennedy Krieger Institute Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine 

United Cerebral Palsy Association - The association's mission is to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities, through their commitment to the principles of independence, inclusion, and self-determination.

Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth Assocation - This website provides a list of support groups and publications about Charcot-Marie-Tooth Disease.

Charge Syndrome

Velo-Cardio-Facial Syndrome; VACTERL Association; Charge Syndrome Foundation, Inc. - The mission of the CHARGE Syndrome Foundation is to provide support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identification, cause and management.

Chronic Fatigue Syndrome

CFIDS Association of America - The CFIDS Association of America is the nation's leading charitable organization dedicated to conquering chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS). The Association plays a catalytic role in accelerating the pace of CFIDS research, achieving public policy victories for people with CFIDS, and focusing mainstream attention on this serious public health concern.

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. Through personal sensitivity, energy, knowledge, and love, SMILES is dedicated to improving the lives of these children in our country and around the world.

Cleft Palate Foundation - A non-profit organization dedicated to optimizing the quality of life for individuals affected by facial birth defects.

Coffin-Lowry Syndrome

Coffin-Lowry Syndrome Foundation - Provides a clearinghouse for  information on Coffin-Lowry Syndrome (CLS), and provides families affected by Coffin-Lowry syndrome a general forum in which to exchange information, ideas, and advice.

Connective Tissue Disorders

National Marfan Foundation - This foundation was founded in 1981 by people who have the Marfan syndrome and their families. It is a voluntary organization that has three objectives: To disseminate accurate and timely information about this condition to patients, family members and the health care community; Provide a network of communications for patients and relatives to share experiences, support one another and improve their medical care; and, Support and foster research.

Cooley Anemia & Thalassemia

Cooley's Anemia Foundation - 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 Foundation - A family support organization which exists to ensure the early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime.

Craniofacial Disorders

Children's Craniofacial Association - Dedicated to improving the quality of life for people with facial differences and their families. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. CCA's mission is to empower and give hope to facially disfigured children and their families.

FACES- The National Craniofacial Association - FACES is dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.

Forward Face: Helping Children with Craniofacial Conditions - Forward Face’s mission is to help children with craniofacial conditions, and their families, find immediate support that helps empower them to successfully manage the craniofacial condition. Forward Face provides comprehensive services: educational support, advocacy, networking, community organizing and other forms of assistance, when necessary.

The National Foundation for Facial Reconstruction (NFFR) - A 501 (c)(3) non-profit organization to enable patients with facial deformities to lead productive, fulfilling lives.

Cri Du Chat Syndrome

5p- Society - This society's mission is to facilitate communication amongst families who have a child with 5p- Syndrome, to spread awareness and education of this syndrome to families and service providers.

Crohn Disease & Colitis

The Crohn's and Colitis Foundation of America (CCFA) - A a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis.

Cyclic Vomiting Syndrome

Cyclic Vomiting Syndrome Association - A volunteer organization serving the needs of CVS patients worldwide, their families, and the growing medical community studying CVS.

Cystic Fibrosis

Cystic Fibrosis Foundation - The mission of the Cystic Fibrosis Foundation is 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.

Cystinosis

Cystinosis Research Network - A volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis.

Cystinuria

Cystinuria Support Network - The Cystinuria Support Network has been developed to provide a resource for putting individuals in touch with each other for support and practical advice.

Balance and Dizziness Disorders

EAR Foundation - The Ear Foundation web site 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

The Barth Syndrome Foundation, Inc. - The foundation's mission is to guide the search for a cure, to educate and support physicians and to create a caring community for affected families.

Batten Disease

Batten Disease Support and Research Association - An international support and research networking organization for families of children and young adults with an inherited neurological degenerative disorder known as Batten Disease.

Beckwith-Wiedemann Syndrome

Beckwith-Wiedemann Support Network (BWSN) - The BWSN is a non-profit 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 - A not-for-profit organization dedicated exclusively to serving the needs of persons facing a bone marrow, blood stem cell or umbilical cord blood transplant.

Brain Injury

Brain Injury Association of America - By acting as a clearinghouse of community service information and resources, participating in legislative advocacy, facilitating prevention awareness, hosting educational programs and encouraging research, the Brain Injury Association of America and its affiliates reach the millions of individuals living with the "silent epidemic" of brain injury.

Brain Tumor

The Brain Tumor Society - This society exists to find a cure for brain tumors. It strives to improve the quality of life of brain tumor patients and their families. It disseminates educational information and provides access to psycho-social support. It raises funds to advance carefully selected scientific research projects, improve clinical care and find a cure.

Children's Brain Tumor Foundation - This foundation was founded by families, friends and physicians of children with brain tumors. The foundation's mission is to raise funds for scientific research and heighten public awareness of this most devastating disease and to improve prognosis and quality of life for those that are affected.

Burns

Phoenix Society for Burn Survivors - For over 25 years, The Phoenix Society for Burn Survivors, Inc. has been connecting burn survivors, their loved ones, and burn care professionals with valuable resources.

Cancer

American Cancer Society - 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.

Candlelighters Childhood Cancer Foundation -  This foundation is committed to their mission of providing support, education and advocacy for children and adolescents with cancer, survivors of childhood/adolescent cancer, their families and the professionals who care for them.

National Childhood Cancer Foundation (CureSearch) - CureSearch unites the world's largest childhood cancer research organization, the Children's Oncology Group, and the National Childhood Cancer Foundation through their shared mission to cure childhood cancer.

Celiac Disease

Celiac Disease Foundation (CDF) - CDF provides support, information and assistance to people affected by Celiac Disease/Dermatitis Herpetiformis (CD/DH).

Celiac Sprue Assocation - 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.

Cerebral Palsy

Kennedy Krieger Institute Phelps Center for Cerebral Palsy and Neurodevelopmental Medicine 

United Cerebral Palsy Association - The association's mission is to advance the independence, productivity and full citizenship of people with cerebral palsy and other disabilities, through their commitment to the principles of independence, inclusion, and self-determination.

Charcot-Marie-Tooth Disease

Charcot-Marie-Tooth Assocation - This website provides a list of support groups and publications about Charcot-Marie-Tooth Disease.

Charge Syndrome

Velo-Cardio-Facial Syndrome; VACTERL Association; Charge Syndrome Foundation, Inc. - The mission of the CHARGE Syndrome Foundation is to provide support to individuals with CHARGE syndrome and their families; to gather, develop, maintain and distribute information about CHARGE syndrome; and to promote awareness and research regarding its identification, cause and management.

Chronic Fatigue Syndrome

CFIDS Association of America - The CFIDS Association of America is the nation's leading charitable organization dedicated to conquering chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS). The Association plays a catalytic role in accelerating the pace of CFIDS research, achieving public policy victories for people with CFIDS, and focusing mainstream attention on this serious public health concern.

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. Through personal sensitivity, energy, knowledge, and love, SMILES is dedicated to improving the lives of these children in our country and around the world.

Cleft Palate Foundation - A non-profit organization dedicated to optimizing the quality of life for individuals affected by facial birth defects.

Coffin-Lowry Syndrome

Coffin-Lowry Syndrome Foundation - Provides a clearinghouse for  information on Coffin-Lowry Syndrome (CLS), and provides families affected by Coffin-Lowry syndrome a general forum in which to exchange information, ideas, and advice.

Connective Tissue Disorders

National Marfan Foundation - This foundation was founded in 1981 by people who have the Marfan syndrome and their families. It is a voluntary organization that has three objectives: To disseminate accurate and timely information about this condition to patients, family members and the health care community; Provide a network of communications for patients and relatives to share experiences, support one another and improve their medical care; and, Support and foster research.

Cooley Anemia & Thalassemia

Cooley's Anemia Foundation - 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 Foundation - A family support organization which exists to ensure the early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lifetime.

Craniofacial Disorders

Children's Craniofacial Association - Dedicated to improving the quality of life for people with facial differences and their families. Nationally and internationally, CCA addresses the medical, financial, psychosocial, emotional, and educational concerns relating to craniofacial conditions. CCA's mission is to empower and give hope to facially disfigured children and their families.

FACES- The National Craniofacial Association - FACES is dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.

Forward Face: Helping Children with Craniofacial Conditions - Forward Face’s mission is to help children with craniofacial conditions, and their families, find immediate support that helps empower them to successfully manage the craniofacial condition. Forward Face provides comprehensive services: educational support, advocacy, networking, community organizing and other forms of assistance, when necessary.

The National Foundation for Facial Reconstruction (NFFR) - A 501 (c)(3) non-profit organization to enable patients with facial deformities to lead productive, fulfilling lives.

Cri Du Chat Syndrome

5p- Society - This society's mission is to facilitate communication amongst families who have a child with 5p- Syndrome, to spread awareness and education of this syndrome to families and service providers.

Crohn Disease & Colitis

The Crohn's and Colitis Foundation of America (CCFA) - A a non-profit, volunteer-driven organization dedicated to finding the cure for Crohn's disease and ulcerative colitis.

Cyclic Vomiting Syndrome

Cyclic Vomiting Syndrome Association - A volunteer organization serving the needs of CVS patients worldwide, their families, and the growing medical community studying CVS.

Cystic Fibrosis

Cystic Fibrosis Foundation - The mission of the Cystic Fibrosis Foundation is 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.

Cystinosis

Cystinosis Research Network - A volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance and educating the public and medical communities about cystinosis.

Cystinuria

Cystinuria Support Network - The Cystinuria Support Network has been developed to provide a resource for putting individuals in touch with each other for support and practical advice.

Deaf-Blind

American Association for the Deaf-Blind - Their mission is to enable deaf-blind persons to achieve their maximum potential through increased independence, productivity and integration into the community.

National Family Association for Deaf-Blind (NFADB) - A non-profit, 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 National Clearinghouse on Children who are Deaf-Blind - DB-LINK's goal is to help parents, teachers, and others by providing them with information to foster the skills, strategies and confidence necessary to nurture and empower deaf-blind children. DB-LINK is a federally-funded service that identifies, coordinates, and disseminates, at no cost, information related to children and youth from birth through 21 years of age.

Diabetes

American Diabetes Association - The American Diabetes Association's mission is to prevent and cure diabetes and to improve the lives of all people affected by diabetes. To fulfill this mission, the American Diabetes Association funds research, publishes scientific findings, provides information and other services to people with diabetes, their families, health care professionals, and the public. The Association is also actively involved in advocating for scientific research and for the rights of people with diabetes.

The Juvenile Diabetes Research Foundation International - Their mission is to find a cure for diabetes and its complications through research.

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.

National Down Syndrome Society - The most comprehensive online resource for information about Down Syndrome.

National Down Syndrome Congress - The mission of the NDSC is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome.

Dysautonomia

The National Dysautonomia Research Foundation - A non-profit foundation established to help those who are afflicted with any of the various forms of Dysautonomia

Dyslexia

Dyslexia Research Institute, Inc. - This organization's goal has been to change the perception of learning differences, specifically in the area of dyslexia and attention deficit disorders (ADD). With proper recognition and intervention, dyslexics and individuals with ADD become successful individuals using their talents and skills to enrich our society.

The International Dyslexia Association (IDA) - A non-profit organization dedicated to helping individuals with dyslexia, their families and the communities that support them.

Dystonia

Dystonia Medical Research Foundation - Their goal is to advance research for more treatments and ultimately a cure; to promote awareness and education; and to support the needs and well being of affected individuals and families.

Ectodermal Dysplasias

The National Foundation for Ectodermal Dysplasias (NFED) - Committed to assisting people with ectodermal dysplasia to live not only normal life spans, but nearly normal life styles.

Ehlers-Danlos Syndrome

Ehlers-Danlos National Foundation - Provides emotional support and the latest information to those affected by Ehlers-Danlos syndrome

Epidermolysis Bullosa Dystrophic

Dystrophic Epidermolysis Bullosa Research Association of America (DebRA)- A national non-profit organization dedicated to both promoting research to find new treatments and a cure for Epidermolysis Bullosa and providing information and support for people with EB and their families

Epilepsy

The American Epilepsy Society - Promotes research and education for professionals dedicated to the prevention, treatment and cure of Epilepsy.

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.

Exostoses

The MHE 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.

Facio-Scapulo-Humeral Muscular Dystrophy

FSH Society, Inc. - Addresses issues and needs related to FacioScapuloHumeral Muscular Dystrophy.

Fatty Oxidation Disorder

FOD Family Support Group- 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

Family Empowerment Network (FEN) - A national organization serving families affected by Fetal Alcohol Syndrome and Fetal Alcohol Effects as well as the professionals involved in their lives.

National Organization on Fetal Alcohol Syndrome - Dedicated to eliminating birth defects caused by alcohol consumption during pregnancy and improving the quality of life for those individuals and families affected.

The Fetal Alcohol Syndrome Family Resource Institute - The mission of the Family Resource Institute (FAS) is 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.

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 Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). They also provide info on their research projects and findings, have a list of support groups worldwide, list international FAS/E conferences as they come up, and provide many other national and international resources. The Fetal Alcohol and Drug Unit is also the home of the Fetal Alcohol Syndrome/Effects Legal Issues Resource Center.

Fragile X Syndrome

FRAXA Research Foundation - FRAXA's mission is to accelerate progress toward effective treatments and ultimately a cure for Fragile X, by directly funding the most promising research. FRAXA also supports families affected by Fragile X and raises awareness of this important but virtually unknown disease.

National Fragile X Foundation - Provides support, education and raises awareness about Fragile X Syndrome.

Deaf-Blind

American Association for the Deaf-Blind - Their mission is to enable deaf-blind persons to achieve their maximum potential through increased independence, productivity and integration into the community.

National Family Association for Deaf-Blind (NFADB) - A non-profit, 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 National Clearinghouse on Children who are Deaf-Blind - DB-LINK's goal is to help parents, teachers, and others by providing them with information to foster the skills, strategies and confidence necessary to nurture and empower deaf-blind children. DB-LINK is a federally-funded service that identifies, coordinates, and disseminates, at no cost, information related to children and youth from birth through 21 years of age.

Diabetes

American Diabetes Association - The American Diabetes Association's mission is to prevent and cure diabetes and to improve the lives of all people affected by diabetes. To fulfill this mission, the American Diabetes Association funds research, publishes scientific findings, provides information and other services to people with diabetes, their families, health care professionals, and the public. The Association is also actively involved in advocating for scientific research and for the rights of people with diabetes.

The Juvenile Diabetes Research Foundation International - Their mission is to find a cure for diabetes and its complications through research.

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.

National Down Syndrome Society - The most comprehensive online resource for information about Down Syndrome.

National Down Syndrome Congress - The mission of the NDSC is to provide information, advocacy and support concerning all aspects of life for individuals with Down syndrome.

Dysautonomia

The National Dysautonomia Research Foundation - A non-profit foundation established to help those who are afflicted with any of the various forms of Dysautonomia

Dyslexia

Dyslexia Research Institute, Inc. - This organization's goal has been to change the perception of learning differences, specifically in the area of dyslexia and attention deficit disorders (ADD). With proper recognition and intervention, dyslexics and individuals with ADD become successful individuals using their talents and skills to enrich our society.

The International Dyslexia Association (IDA) - A non-profit organization dedicated to helping individuals with dyslexia, their families and the communities that support them.

Dystonia

Dystonia Medical Research Foundation - Their goal is to advance research for more treatments and ultimately a cure; to promote awareness and education; and to support the needs and well being of affected individuals and families.

Ectodermal Dysplasias

The National Foundation for Ectodermal Dysplasias (NFED) - Committed to assisting people with ectodermal dysplasia to live not only normal life spans, but nearly normal life styles.

Ehlers-Danlos Syndrome

Ehlers-Danlos National Foundation - Provides emotional support and the latest information to those affected by Ehlers-Danlos syndrome

Epidermolysis Bullosa Dystrophic

Dystrophic Epidermolysis Bullosa Research Association of America (DebRA)- A national non-profit organization dedicated to both promoting research to find new treatments and a cure for Epidermolysis Bullosa and providing information and support for people with EB and their families

Epilepsy

The American Epilepsy Society - Promotes research and education for professionals dedicated to the prevention, treatment and cure of Epilepsy.

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.

Exostoses

The MHE 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.

Facio-Scapulo-Humeral Muscular Dystrophy

FSH Society, Inc. - Addresses issues and needs related to FacioScapuloHumeral Muscular Dystrophy.

Fatty Oxidation Disorder

FOD Family Support Group- 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

Family Empowerment Network (FEN) - A national organization serving families affected by Fetal Alcohol Syndrome and Fetal Alcohol Effects as well as the professionals involved in their lives.

National Organization on Fetal Alcohol Syndrome - Dedicated to eliminating birth defects caused by alcohol consumption during pregnancy and improving the quality of life for those individuals and families affected.

The Fetal Alcohol Syndrome Family Resource Institute - The mission of the Family Resource Institute (FAS) is 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.

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 Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). They also provide info on their research projects and findings, have a list of support groups worldwide, list international FAS/E conferences as they come up, and provide many other national and international resources. The Fetal Alcohol and Drug Unit is also the home of the Fetal Alcohol Syndrome/Effects Legal Issues Resource Center.

Fragile X Syndrome

FRAXA Research Foundation - FRAXA's mission is to accelerate progress toward effective treatments and ultimately a cure for Fragile X, by directly funding the most promising research. FRAXA also supports families affected by Fragile X and raises awareness of this important but virtually unknown disease.

National Fragile X Foundation - Provides support, education and raises awareness about Fragile X Syndrome.

Galactosemia

Parents of Galactosemic Children, Inc. (PGC) - A national, non-profit, volunteer organization whose mission is to provide information, support, and networking opportunities to families affected by galactosemia.

Gastrointestinal Disorders

The Oley Foundation - A national, independent, non-profit organization that provides up-to-date information, outreach services, conference activities, and emotional support for homePEN consumers, their families, caregivers and professionals.

Gastrointestinal Reflux

Pediatric Adolescent Gastroesophageal Reflux Association, Inc. (PAGER) - A 501(c)(3) non-profit membership organization that provides information and support to parents, patients and doctors about Gastroesophageal Reflux (GER). Information is available for adults.

Gaucher Disease

National Gaucher Foundation (NGF) - Dedicated to supporting and promoting research into the causes of, and a cure for Gaucher Disease. The mission of the NGF is to find a cure for Gaucher Disease by funding vital research programs, to meet the ever- increasing needs of patients and families, as well as to promote community/physician awareness and educational programs. The NGF offers a variety of services and programs including regional chapter meetings, patient support groups, international conferences, as well as the CARE Program and the Care+Plus Program which provide critical financial assistance to individuals with Gaucher Disease.

Genetic Disorders

Genetic Alliance - An international coalition of individuals, professionals and genetic support organizations that are working together to promote healthy lives for everyone impacted by genetics.

The MAGIC Foundation - A national non-profit 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.

Velo-Cardio-Facial Syndrome Educational Foundation Inc. - The Foundation is an international not-for-profit organization dedicated to providing support and information to individuals who are affected by this syndrome, their families, physicians and other practitioners. 

Glaucoma

Glaucoma Research Foundation - A national nonprofit organization dedicated to protecting the sight and independence of people 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.

Gluten Intolerance

Gluten Intolerance Group of North America  -  This group's mission is 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) - A non-profit organization that was formed by parents whose babies died from this devastating infection. The Group B Strep 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.

Growth Disorders

Human Growth Foundation - A voluntary, non-profit organization whose mission is to help children and adults with disorders of growth and growth hormone through research, education, support, and advocacy.

MAGIC Foundation - A national non-profit 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.

Guillian-Barre Syndrome

Guillian-Barre Syndrome Foundation International - Provides support and assistance to GBS patients and their families and is committed to increasing knowledge and awareness in both the public and professional communities.

Galactosemia

Parents of Galactosemic Children, Inc. (PGC) - A national, non-profit, volunteer organization whose mission is to provide information, support, and networking opportunities to families affected by galactosemia.

Gastrointestinal Disorders

The Oley Foundation - A national, independent, non-profit organization that provides up-to-date information, outreach services, conference activities, and emotional support for homePEN consumers, their families, caregivers and professionals.

Gastrointestinal Reflux

Pediatric Adolescent Gastroesophageal Reflux Association, Inc. (PAGER) - A 501(c)(3) non-profit membership organization that provides information and support to parents, patients and doctors about Gastroesophageal Reflux (GER). Information is available for adults.

Gaucher Disease

National Gaucher Foundation (NGF) - Dedicated to supporting and promoting research into the causes of, and a cure for Gaucher Disease. The mission of the NGF is to find a cure for Gaucher Disease by funding vital research programs, to meet the ever- increasing needs of patients and families, as well as to promote community/physician awareness and educational programs. The NGF offers a variety of services and programs including regional chapter meetings, patient support groups, international conferences, as well as the CARE Program and the Care+Plus Program which provide critical financial assistance to individuals with Gaucher Disease.

Genetic Disorders

Genetic Alliance - An international coalition of individuals, professionals and genetic support organizations that are working together to promote healthy lives for everyone impacted by genetics.

The MAGIC Foundation - A national non-profit 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.

Velo-Cardio-Facial Syndrome Educational Foundation Inc. - The Foundation is an international not-for-profit organization dedicated to providing support and information to individuals who are affected by this syndrome, their families, physicians and other practitioners. 

Glaucoma

Glaucoma Research Foundation - A national nonprofit organization dedicated to protecting the sight and independence of people 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.

Gluten Intolerance

Gluten Intolerance Group of North America  -  This group's mission is 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) - A non-profit organization that was formed by parents whose babies died from this devastating infection. The Group B Strep 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.

Growth Disorders

Human Growth Foundation - A voluntary, non-profit organization whose mission is to help children and adults with disorders of growth and growth hormone through research, education, support, and advocacy.

MAGIC Foundation - A national non-profit 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.

Guillian-Barre Syndrome

Guillian-Barre Syndrome Foundation International - Provides support and assistance to GBS patients and their families and is committed to increasing knowledge and awareness in both the public and professional communities.

Hallervorden- Spatz Syndrome

NBIA Disorders Association - This association was created to provide families, physicians, and support providers with information about an inherited disease called Neurodegeneration with Brain Iron Accumulation (NBIA)

Hearing Impaired

Alexander Graham Bell Association for the Deaf and Hard of Hearing - An international membership organization and resource center on hearing loss and spoken language approaches and related issues.

National Association for the Deaf - Programs and activities include 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.

National Deaf Education Network and Clearinghouse

Helen Keller Services For the Blind (HKSB) - A renowned non-profit 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.

Sign Language - Interested in sign language? Here are some great resources about American Sign Language (ASL), as well as other forms of sign language around the world.

Heart Disorders

American Heart Association - Supports research activities broadly related to cardiovascular function and diseases, stroke, basic science, clinical, bioengineering/biotechnology and public health problems.

Kids with Heart National Association for Children with Heart Disorders, Inc. -  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 -  Dedicated to aiding individuals in the management and care of vascular anomalies.

Hemiplegia

Alternating Hemiplegia of Childhood Foundation - Provides support to children with AHC and the parents who care for them.

Children's Hemiplegia and Stoke Association (CHASA)  - 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 - Dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research.

Hemorrhagic Telangiectasia/ Osler-Weber-Rendu Syndrome

Hereditary Hemorrhagic Telangiectasia (HHT) Foundation International, Inc. - A worldwide, non-profit organization whose purpose is to support HHT patients and families and educate medical professionals.

Hermansky-Pudlak Syndrome

Hermansky-Pudlak Syndrome (HPS) Network, Inc. - HPS is a genetic metabolic disorder which causes albinism, visual impairment, and a platelet dysfunction with prolonged bleeding. The HPS Network's mission is to gather and disseminate information, to promote awareness and research and to provide support to their  members.

Hermaphoroditism

Intersex Society of North America (ISNA) - 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.

Hernial Diaphragmatic

CHERUBS- The Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support.

Histiocytosis

Histiocytosis Association of America - A non-profit 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.

Holoprosencephaly

The Carter Centers for Brain Research - A worldwide network of scientists, health care professionals and families dedicated to research, education and practice.

Hydranencephaly

Rays of Sunshine - A comprehensive parent-driven source of  information and support on the Internet available for those who care for someone with  hydranencephaly. Connect with other parents who have children with hydrocephaly here.

Hydrocephalus

Hydrocephalus Association - The Hydrocephalus Association's mission is to provide support, education and advocacy for individuals, families, and professionals. Their goal is to ensure that families and individuals dealing with the complex issues of hydrocephalus receive personal support, comprehensive educational materials, ongoing quality health care. They provide a wealth of services and resources to members and non-members alike.

National Hydrocephalus Foundation - Hydrocephalus occurs when there is an imbalance between the production and the absorption of cerebral spinal fluid. The foundation website includes excellent resources and information for families.

Hyperlexia

Hyperlexia.net - A non-profit 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 syndrome called hyperlexia.

Hypoparathyroidism

National Graves' Disease Foundation - The leading cause of hyperthyroidism, Graves' disease represents a basic defect in the immune system, causing production of immunoglobulins (antibodies) which stimulate and attack the thyroid gland, causing growth of the gland and overproduction of thyroid hormone.

Ichthyosis

FIRST: Foundation for Ichthyosis & Related Skin Types - Devoted to helping individuals and families with the genetic diseases collectively called the ichthyoses. Offering information and education to both lay and professional communities, advocating on behalf of our members in the political and healthcare arenas and serving as a 'bridge' between the ichthyosis community and the medical profession.

Immune Disorders

Immune Deficiency Foundation -  Seeks to improve the diagnosis and treatment of patients with primary immune deficiency disease through research and education.

Incontinence

National Association for Continence (NAFC) -  Leading source for public education and advocacy about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence.

Intestinal Pseudo-Obstruction Syndrome

International Foundation for Functional GI Disorders (IFFGD) -  A non-profit education and research organization whose mission is to inform, assist and support people affected by GI disorders.

Joubert Syndrome

The Joubert Syndrome Foundation & Related Cerebellar Disorders - 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

NBIA Disorders Association - This association was created to provide families, physicians, and support providers with information about an inherited disease called Neurodegeneration with Brain Iron Accumulation (NBIA)

Hearing Impaired

Alexander Graham Bell Association for the Deaf and Hard of Hearing - An international membership organization and resource center on hearing loss and spoken language approaches and related issues.

National Association for the Deaf - Programs and activities include 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.

National Deaf Education Network and Clearinghouse

Helen Keller Services For the Blind (HKSB) - A renowned non-profit 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.

Sign Language - Interested in sign language? Here are some great resources about American Sign Language (ASL), as well as other forms of sign language around the world.

Heart Disorders

American Heart Association - Supports research activities broadly related to cardiovascular function and diseases, stroke, basic science, clinical, bioengineering/biotechnology and public health problems.

Kids with Heart National Association for Children with Heart Disorders, Inc. -  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 -  Dedicated to aiding individuals in the management and care of vascular anomalies.

Hemiplegia

Alternating Hemiplegia of Childhood Foundation - Provides support to children with AHC and the parents who care for them.

Children's Hemiplegia and Stoke Association (CHASA)  - 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 - Dedicated to finding better treatments and cures for bleeding and clotting disorders and to preventing the complications of these disorders through education, advocacy and research.

Hemorrhagic Telangiectasia/ Osler-Weber-Rendu Syndrome

Hereditary Hemorrhagic Telangiectasia (HHT) Foundation International, Inc. - A worldwide, non-profit organization whose purpose is to support HHT patients and families and educate medical professionals.

Hermansky-Pudlak Syndrome

Hermansky-Pudlak Syndrome (HPS) Network, Inc. - HPS is a genetic metabolic disorder which causes albinism, visual impairment, and a platelet dysfunction with prolonged bleeding. The HPS Network's mission is to gather and disseminate information, to promote awareness and research and to provide support to their  members.

Hermaphoroditism

Intersex Society of North America (ISNA) - 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.

Hernial Diaphragmatic

CHERUBS- The Association of Congenital Diaphragmatic Hernia Research, Advocacy, and Support.

Histiocytosis

Histiocytosis Association of America - A non-profit 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.

Holoprosencephaly

The Carter Centers for Brain Research - A worldwide network of scientists, health care professionals and families dedicated to research, education and practice.

Hydranencephaly

Rays of Sunshine - A comprehensive parent-driven source of  information and support on the Internet available for those who care for someone with  hydranencephaly. Connect with other parents who have children with hydrocephaly here.

Hydrocephalus

Hydrocephalus Association - The Hydrocephalus Association's mission is to provide support, education and advocacy for individuals, families, and professionals. Their goal is to ensure that families and individuals dealing with the complex issues of hydrocephalus receive personal support, comprehensive educational materials, ongoing quality health care. They provide a wealth of services and resources to members and non-members alike.

National Hydrocephalus Foundation - Hydrocephalus occurs when there is an imbalance between the production and the absorption of cerebral spinal fluid. The foundation website includes excellent resources and information for families.

Hyperlexia

Hyperlexia.net - A non-profit 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 syndrome called hyperlexia.

Hypoparathyroidism

National Graves' Disease Foundation - The leading cause of hyperthyroidism, Graves' disease represents a basic defect in the immune system, causing production of immunoglobulins (antibodies) which stimulate and attack the thyroid gland, causing growth of the gland and overproduction of thyroid hormone.

Ichthyosis

FIRST: Foundation for Ichthyosis & Related Skin Types - Devoted to helping individuals and families with the genetic diseases collectively called the ichthyoses. Offering information and education to both lay and professional communities, advocating on behalf of our members in the political and healthcare arenas and serving as a 'bridge' between the ichthyosis community and the medical profession.

Immune Disorders

Immune Deficiency Foundation -  Seeks to improve the diagnosis and treatment of patients with primary immune deficiency disease through research and education.

Incontinence

National Association for Continence (NAFC) -  Leading source for public education and advocacy about the causes, prevention, diagnosis, treatments, and management alternatives for incontinence.

Intestinal Pseudo-Obstruction Syndrome

International Foundation for Functional GI Disorders (IFFGD) -  A non-profit education and research organization whose mission is to inform, assist and support people affected by GI disorders.

Joubert Syndrome

The Joubert Syndrome Foundation & Related Cerebellar Disorders - 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 - Exists to serve the needs, interests and welfare of all kidney patients and their families. Its 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. - A major voluntary health organization, 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.

Polycystic Kidney Research Foundation (PKD) -  Foundation is devoted to determining the cause, improving clinical treatment and discovering a cure.

Kinsborne's Syndrome

National Pediatric Myoclonus Center - Purpose of a national center for myoclonus is to provide the best care possible for patients whose myoclonus began during childhood.

Klinefelter Syndrome

Klinefelter Syndrome Association, Inc. - 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 mosiac and other sex chromosome variants.

Klippel-Trenaunay Syndrome

Klippel-Trenaunay Syndrome (K-T) Support Group - Welcomes patients and their families as members. This World Wide Web site for the K-T Support Group has been established to provide information about the group and about Klippel-Trenaunay Syndrome, and to provide families, adults with K-T, and professionals with links to the group.

Latex Allergy

Latex Allergy Information Services - Provides links to latex allergy related web sites.

Learning Disabilities

Learning Disabilities Association of America - Advocates for the almost three million students of school age with learning disabilities and for adults affected with learning disabilities.

National Center for Learning Disabilities - Offers a periodic newsletter and educational materials for parents, educators and those with a LD.

Leptomeningeal Angiomatosis

Lesch-Nylan Registry - Offers 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 World's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The Society's mission is to cure leukemia, lymphoma, Hodgkin's disease and myeloma, and to improve the quality of life of patients and their families.

Leukodystrophy

United Leukodystrophy Foundation - 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.

Lissencephaly

Lissencephaly - Information on lissencephaly.

Liver Disease

American Liver Foundation - A non-profit organization dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education and advocacy.

Long Q-T Syndrome

Cardiac Arrhythmias Research & Education Foundation Inc. - Their mission is to provide funding for research and to increase professional and public awareness of unexpected sudden cardiac death due to acquired heart disease and inherited rhythm disorders.

Sudden Arrhythmia Death Syndromes (SADS) Foundation -  Their mission is to save the lives and support the families of children & young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities.

Lowe Syndrome

Lowe Syndrome Association (LSA) - LSA is an international, voluntary, non-profit organization made up of parents, friends, professionals, and others who are interested in Lowe syndrome, a rare genetic condition that affects boys.

Lung Diseases

American Lung Association - Fights lung disease in all its forms, with special emphasis on asthma, tobacco control and environmental health.

Lupus Erthematosis

Lupus Foundation of America - Their mission is to educate and support those affected by lupus and find the cure.

SLE Lupus Foundation Inc. - Provides patient services, education, public awareness, and funding for lupus research.

Lyme Disease

American Lyme Disease Foundation, Inc. - A pro-active organization dedicated to the prevention, diagnosis, treatment and control of Lyme disease and other tick-borne infections.

Lyme Disease Foundation, Inc. (LDF) - A non-profit medical healthcare agency dedicated to finding solutions to tick-borne disorders.

Lymphangioma

AboutFace International - Provides information and support to individuals with facial differences and their families.

Lymphedema

National Lymphedema Network (NLN) - A non-profit 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.

Kidney Disorders

American Association of Kidney Patients - Exists to serve the needs, interests and welfare of all kidney patients and their families. Its 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. - A major voluntary health organization, 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.

Polycystic Kidney Research Foundation (PKD) -  Foundation is devoted to determining the cause, improving clinical treatment and discovering a cure.

Kinsborne's Syndrome

National Pediatric Myoclonus Center - Purpose of a national center for myoclonus is to provide the best care possible for patients whose myoclonus began during childhood.

Klinefelter Syndrome

Klinefelter Syndrome Association, Inc. - 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 mosiac and other sex chromosome variants.

Klippel-Trenaunay Syndrome

Klippel-Trenaunay Syndrome (K-T) Support Group - Welcomes patients and their families as members. This World Wide Web site for the K-T Support Group has been established to provide information about the group and about Klippel-Trenaunay Syndrome, and to provide families, adults with K-T, and professionals with links to the group.

Latex Allergy

Latex Allergy Information Services - Provides links to latex allergy related web sites.

Learning Disabilities

Learning Disabilities Association of America - Advocates for the almost three million students of school age with learning disabilities and for adults affected with learning disabilities.

National Center for Learning Disabilities - Offers a periodic newsletter and educational materials for parents, educators and those with a LD.

Leptomeningeal Angiomatosis

Lesch-Nylan Registry - Offers 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 World's largest voluntary health organization dedicated to funding blood cancer research, education and patient services. The Society's mission is to cure leukemia, lymphoma, Hodgkin's disease and myeloma, and to improve the quality of life of patients and their families.

Leukodystrophy

United Leukodystrophy Foundation - 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.

Lissencephaly

Lissencephaly - Information on lissencephaly.

Liver Disease

American Liver Foundation - A non-profit organization dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education and advocacy.

Long Q-T Syndrome

Cardiac Arrhythmias Research & Education Foundation Inc. - Their mission is to provide funding for research and to increase professional and public awareness of unexpected sudden cardiac death due to acquired heart disease and inherited rhythm disorders.

Sudden Arrhythmia Death Syndromes (SADS) Foundation -  Their mission is to save the lives and support the families of children & young adults who are genetically predisposed to sudden death due to heart rhythm abnormalities.

Lowe Syndrome

Lowe Syndrome Association (LSA) - LSA is an international, voluntary, non-profit organization made up of parents, friends, professionals, and others who are interested in Lowe syndrome, a rare genetic condition that affects boys.

Lung Diseases

American Lung Association - Fights lung disease in all its forms, with special emphasis on asthma, tobacco control and environmental health.

Lupus Erthematosis

Lupus Foundation of America - Their mission is to educate and support those affected by lupus and find the cure.

SLE Lupus Foundation Inc. - Provides patient services, education, public awareness, and funding for lupus research.

Lyme Disease

American Lyme Disease Foundation, Inc. - A pro-active organization dedicated to the prevention, diagnosis, treatment and control of Lyme disease and other tick-borne infections.

Lyme Disease Foundation, Inc. (LDF) - A non-profit medical healthcare agency dedicated to finding solutions to tick-borne disorders.

Lymphangioma

AboutFace International - Provides information and support to individuals with facial differences and their families.

Lymphedema

National Lymphedema Network (NLN) - A non-profit 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.

Macular Diseases

Association for Macular Diseases, Inc. - A not-for-profit 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.

Macular Degeneration Foundation - Dedicated to serving the interests of those affected by Macular Degeneration and related low vision conditions.

Macular Degeneration International - Offers information and support as its primary goal, which is done through personal contact, telephone, correspondence, Internet, and 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 only association in the United States dedicated to the control of malignant hyperthermia (MH). MH is a silent, inherited metabolic disorder of muscle. Affected individuals usually appear perfectly normal and have no functional difficulties in everyday life. However, when these individuals are given a triggering anesthetic this silent disorder may turn deadly.

Maple Syrup Urine Disease

Maple Syrup Urine Disease Family Support Group - Receive general information and join the support group via their website.

Marfan Syndrome

National Marfan Foundation - Marfan syndrome is a heritable disorder of the connective tissue that affects many organ systems, including the skeleton, lungs, eyes, heart and blood vessels. Their website is designed to disseminate accurate and timely information about this condition to patients, family members and the health care community. And, to provide a network of communications for patients and relatives to share experiences, support one another, improve their medical care and to support and foster research.

Mast Cell Disease Systematic

Mastocytosis Society, Inc - A non-profit organization dedicated to helping patients, caregivers and medical personnel understand Mast Cell Disorders and the impact they have on patient's lives.

Mental Illness

National Alliance For The Mentally Ill (NAMI) - A non-profit, 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.

SAMHSA's National Mental Health Information Center - The Substance Abuse and Mental Health Services Administration's (SAMHSA) National Mental Health Information Center provides information about mental health via a toll-free telephone number (800-789-2647), this web site, 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) - Promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities.

People First International - People First and the self-advocacy movement has grown into an international movement in 43 countries, with an estimated 17,000 members or more.

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 supports and services; connect families; inspire communities and influence public policy.

Microcephaly

FACES: The National Craniofacial Association - Dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.

Genetic Alliance - An international coalition comprised of more than 600 advocacy, research and healthcare organizations that represent millions of individuals with genetic conditions and their interests.

March of Dimes Birth Defects Foundation - March of Dime's mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. They carry out this mission through research, community services, education and advocacy to save babies' lives.

Mitochondrial Disease

United Mitochondrial Disease Foundation - Promotes research and education for the diagnosis, treatment and cure of mitochondrial disorders and provides support to affected individuals and families.

MPS Disorders

The National MPS Society - Mucopolysaccharidoses (MPS) and Mucolipidoses (ML) are genetic lysosomal storage disorders caused by the body's inability to produce specific enzymes.  The National MPS Society supports research, supports families and works to increase public and professional awareness.

Multiple Sclerosis

National Multiple Sclerosis Society - The Society and its network of chapters nationwide promote research, educate, advocate on critical issues, and organize a wide range of programs—including support for the newly diagnosed and those living with MS over time.

Multiple Sclerosis Foundation - Assistance, support, information and resources.

Muscular Dystrophy

Muscular Dystrophy Association (MDA) - The source for news and information about neuromuscular diseases, MDA research and services for adults and children with neuromuscular diseases and their families.

Muscular Dystrophy Family Foundation, Inc. (MDFF) - Offers comprehensive support programs to ensure clients' medical and emotional needs are taken care of. Their medical directors and case managers will help you through every stage of the process. The MDFF is the only agency whose mission is to fund adaptive equipment. From wheelchairs to van lifts to communication devices and beyond, they can help you get the equipment you need to live with No Boundaries®.  

Parent Project Muscular Dystrophy - Parent Project Muscular Dystrophy mobilizes people in the United States and Worldwide in collaborative effort to enable people with Duchenne and Becker Muscular Dystrophy to survive, thrive and fully participate within their families and communities into adulthood and beyond.

Myasthenia Gravis

The Myasthenia Gravis Foundation of America, Inc. - A non-profit organization, is 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.

Myelin Disorders

The Myelin Project - An international grassroots organization whose mission is to accelerate medical research on myelin repair.

Myelitis

Transverse Myelitis Association -  Transverse Myelitis is a rare neurological disorder that is part of a spectrum of neuroimmunologic diseases of the central nervous system. Other disorders in this spectrum include, Acute Disseminated Encephalomyelitis (ADEM), Optic Neuritis, and Neuromyelitis Optica (Devic's disease).  This is an organization dedicated to advocacy for those who have these rare neuroimmunologic diseases.

Myeloma

International Myeloma Foundation (IMF) - The IMF is dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.

Myoclonus

National Pediatric Myoclonus Center - The purpose of a national center for Myoclonus is to provide the best care possible for patients whose myoclonus began during childhood.

Myositis Inflammatory Myopathiesis

The Myositis Association - Their mission is to improve the lives of those affected by inflammatory myopathies (autoimmune diseases which normally fight infections and viruses). They will seek out persons with inflammatory myopathies, provide a support network, act as a resource for patients and the medical community, advocate for patients, and promote research into the causes and treatment of the diseases. The Myositis Association website also includes information about Juvenile Myositis.

Myotubular Myopathy

Myotubular Myopathy Resource Group - This site has information about the three forms of myotubular myopathy, x-linked, autosomal recessive and autosomal dominant. You can learn and connect with other families here and received the periodic newsletter and other information.

Nager & Miller Syndromes

Foundation for Nager and Miller Syndromes (FNMS) - An international support group dedicated to helping those affected by these two similar genetic conditions which involve severe facial and limb anomalies, but does not usually affect intellect. These syndromes affect one's ability to see, hear, breathe, eat, walk, talk and write.

Neurofibromatosis

Children's Tumor Foundation - A non-profit medical foundation, dedicated to improving the health and well-being of individuals and families affected by the neurofibromatoses (NF). The neurofibromatoses (NF) are a set of genetic disorders which cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. NF causes tumors to grow anywhere on or in the body. It also leads to developmental abnormalities.

Neurofibromatosis, Inc.  - An organization of independent state and regional chapters, providing support and services to NF families. In addition to assisting individuals and families, NF, Inc. works closely with clinical and research professionals who specialize in the treatment of NF.

Neurotransmitter Disease

Pediatric Neurotransmitter Disease Association - A non-profit, voluntary organization. The mission of the association 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.

Nevi Congenital

Nevus Network - The Congenital Nevus Support Group.

Niemann-Pick Disease

Ara Parseghian Medical Research Foundation - Niemann-Pick Type C disease (NP-C) is a genetic, pediatric, neurodegenerative disorder. It is responsible for the build-up of cholesterol in such areas as the spleen and liver and for accumulation of gangliosides in the brain. This ganglioside build-up results in the eventual damage to the nervous system. This metabolic disorder leads to a series of neurological problems that are ultimately fatal.

National Nieman-Pick Disease Foundation, Inc. - An international, voluntary, non-profit organization made up of parents, medical and educational professionals, friends, relatives and others who are committed to finding a cure for Niemann-Pick disease.

Noonan Syndrome

Noonan Syndrome Support Group, Inc. - Noonan Syndrome is a condition which affects both children and adults. It is often associated with congenital heart disease and short stature. This group is committed to providing support, current information, and understanding to those affected by Noonan syndrome and associated anomalies.

Macular Diseases

Association for Macular Diseases, Inc. - A not-for-profit 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.

Macular Degeneration Foundation - Dedicated to serving the interests of those affected by Macular Degeneration and related low vision conditions.

Macular Degeneration International - Offers information and support as its primary goal, which is done through personal contact, telephone, correspondence, Internet, and 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 only association in the United States dedicated to the control of malignant hyperthermia (MH). MH is a silent, inherited metabolic disorder of muscle. Affected individuals usually appear perfectly normal and have no functional difficulties in everyday life. However, when these individuals are given a triggering anesthetic this silent disorder may turn deadly.

Maple Syrup Urine Disease

Maple Syrup Urine Disease Family Support Group - Receive general information and join the support group via their website.

Marfan Syndrome

National Marfan Foundation - Marfan syndrome is a heritable disorder of the connective tissue that affects many organ systems, including the skeleton, lungs, eyes, heart and blood vessels. Their website is designed to disseminate accurate and timely information about this condition to patients, family members and the health care community. And, to provide a network of communications for patients and relatives to share experiences, support one another, improve their medical care and to support and foster research.

Mast Cell Disease Systematic

Mastocytosis Society, Inc - A non-profit organization dedicated to helping patients, caregivers and medical personnel understand Mast Cell Disorders and the impact they have on patient's lives.

Mental Illness

National Alliance For The Mentally Ill (NAMI) - A non-profit, 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.

SAMHSA's National Mental Health Information Center - The Substance Abuse and Mental Health Services Administration's (SAMHSA) National Mental Health Information Center provides information about mental health via a toll-free telephone number (800-789-2647), this web site, 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) - Promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual and developmental disabilities.

People First International - People First and the self-advocacy movement has grown into an international movement in 43 countries, with an estimated 17,000 members or more.

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 supports and services; connect families; inspire communities and influence public policy.

Microcephaly

FACES: The National Craniofacial Association - Dedicated to assisting children and adults who have craniofacial disorders resulting from disease, accident, or birth.

Genetic Alliance - An international coalition comprised of more than 600 advocacy, research and healthcare organizations that represent millions of individuals with genetic conditions and their interests.

March of Dimes Birth Defects Foundation - March of Dime's mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. They carry out this mission through research, community services, education and advocacy to save babies' lives.

Mitochondrial Disease

United Mitochondrial Disease Foundation - Promotes research and education for the diagnosis, treatment and cure of mitochondrial disorders and provides support to affected individuals and families.

MPS Disorders

The National MPS Society - Mucopolysaccharidoses (MPS) and Mucolipidoses (ML) are genetic lysosomal storage disorders caused by the body's inability to produce specific enzymes.  The National MPS Society supports research, supports families and works to increase public and professional awareness.

Multiple Sclerosis

National Multiple Sclerosis Society - The Society and its network of chapters nationwide promote research, educate, advocate on critical issues, and organize a wide range of programs—including support for the newly diagnosed and those living with MS over time.

Multiple Sclerosis Foundation - Assistance, support, information and resources.

Muscular Dystrophy

Muscular Dystrophy Association (MDA) - The source for news and information about neuromuscular diseases, MDA research and services for adults and children with neuromuscular diseases and their families.

Muscular Dystrophy Family Foundation, Inc. (MDFF) - Offers comprehensive support programs to ensure clients' medical and emotional needs are taken care of. Their medical directors and case managers will help you through every stage of the process. The MDFF is the only agency whose mission is to fund adaptive equipment. From wheelchairs to van lifts to communication devices and beyond, they can help you get the equipment you need to live with No Boundaries®.  

Parent Project Muscular Dystrophy - Parent Project Muscular Dystrophy mobilizes people in the United States and Worldwide in collaborative effort to enable people with Duchenne and Becker Muscular Dystrophy to survive, thrive and fully participate within their families and communities into adulthood and beyond.

Myasthenia Gravis

The Myasthenia Gravis Foundation of America, Inc. - A non-profit organization, is 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.

Myelin Disorders

The Myelin Project - An international grassroots organization whose mission is to accelerate medical research on myelin repair.

Myelitis

Transverse Myelitis Association -  Transverse Myelitis is a rare neurological disorder that is part of a spectrum of neuroimmunologic diseases of the central nervous system. Other disorders in this spectrum include, Acute Disseminated Encephalomyelitis (ADEM), Optic Neuritis, and Neuromyelitis Optica (Devic's disease).  This is an organization dedicated to advocacy for those who have these rare neuroimmunologic diseases.

Myeloma

International Myeloma Foundation (IMF) - The IMF is dedicated to improving the quality of life of myeloma patients while working toward prevention and a cure.

Myoclonus

National Pediatric Myoclonus Center - The purpose of a national center for Myoclonus is to provide the best care possible for patients whose myoclonus began during childhood.

Myositis Inflammatory Myopathiesis

The Myositis Association - Their mission is to improve the lives of those affected by inflammatory myopathies (autoimmune diseases which normally fight infections and viruses). They will seek out persons with inflammatory myopathies, provide a support network, act as a resource for patients and the medical community, advocate for patients, and promote research into the causes and treatment of the diseases. The Myositis Association website also includes information about Juvenile Myositis.

Myotubular Myopathy

Myotubular Myopathy Resource Group - This site has information about the three forms of myotubular myopathy, x-linked, autosomal recessive and autosomal dominant. You can learn and connect with other families here and received the periodic newsletter and other information.

Nager & Miller Syndromes

Foundation for Nager and Miller Syndromes (FNMS) - An international support group dedicated to helping those affected by these two similar genetic conditions which involve severe facial and limb anomalies, but does not usually affect intellect. These syndromes affect one's ability to see, hear, breathe, eat, walk, talk and write.

Neurofibromatosis

Children's Tumor Foundation - A non-profit medical foundation, dedicated to improving the health and well-being of individuals and families affected by the neurofibromatoses (NF). The neurofibromatoses (NF) are a set of genetic disorders which cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. NF causes tumors to grow anywhere on or in the body. It also leads to developmental abnormalities.

Neurofibromatosis, Inc.  - An organization of independent state and regional chapters, providing support and services to NF families. In addition to assisting individuals and families, NF, Inc. works closely with clinical and research professionals who specialize in the treatment of NF.

Neurotransmitter Disease

Pediatric Neurotransmitter Disease Association - A non-profit, voluntary organization. The mission of the association 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.

Nevi Congenital

Nevus Network - The Congenital Nevus Support Group.

Niemann-Pick Disease

Ara Parseghian Medical Research Foundation - Niemann-Pick Type C disease (NP-C) is a genetic, pediatric, neurodegenerative disorder. It is responsible for the build-up of cholesterol in such areas as the spleen and liver and for accumulation of gangliosides in the brain. This ganglioside build-up results in the eventual damage to the nervous system. This metabolic disorder leads to a series of neurological problems that are ultimately fatal.

National Nieman-Pick Disease Foundation, Inc. - An international, voluntary, non-profit organization made up of parents, medical and educational professionals, friends, relatives and others who are committed to finding a cure for Niemann-Pick disease.

Noonan Syndrome

Noonan Syndrome Support Group, Inc. - Noonan Syndrome is a condition which affects both children and adults. It is often associated with congenital heart disease and short stature. This group is committed to providing support, current information, and understanding to those affected by Noonan syndrome and associated anomalies.

Osteogenesis Imperfecta

Osteogenesis Imperfecta Foundation - The Osteogenesis Imperfecta Foundation's mission is to improve the quality of life for individuals affected by OI through research to find a cure, education, awareness, and mutual support.  Osteogenesis Imperfecta (OI) is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. A person with OI can break a rib while coughing, or a leg by rolling over in their sleep.

Ostomy

The United Ostomy Association, Inc. - The United Ostomy Association 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.

Oxalosis and Hyperoxaluria

The Oxalosis and Hyperoxaluria Foundation - The mission of the Oxalosis and Hyperoxaluria Foundation (OHF) is to seek the cause, improve the clinical treatment and discover the cure of hyperoxaluria and oxalate stone disease and enhance the quality of life of patients and their families.

Pituitary Disorders

Pituitary Network Association - The Pituitary Network Association (PNA) is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them.

Polio

Post-Polio Health International - Post-Polio Health International's (PHI) mission is to enhance the lives and independence of polio survivors and home mechanical ventilator users by promoting education, networking, and advocacy among these individuals and healthcare providers.

Prader-Willi Syndrome

Prader-Willi Association - The Prader-Willi syndrome Association's mission is to provide to parents and professionals a national and international network of information, support services, and research endeavors to expressly meet the needs of affected children and adults and their families.

Pseudoxanthoma Elasticum (PXE)

National Association for Pseudoxanthoma Elasticum - Pseudoxanthoma Elasticum, or PXE, is an inherited disorder that affects the skin, the retina of the eyes and the cardiovascular system.

Psoriasis

National Psoriasis Foundation - Psoriasis is a non-contagious, chronic skin disease that comes in different forms and varying levels of severity. Psoriatic arthritis is a form of joint disease that is similar to rheumatoid arthritis.

Reflex Sympathetic Dystrophy Syndrome

Reflex Sympathetic Dystrophy Syndrome Association Of America - The Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA) is a national not-for-profit organization, headquartered that promotes greater public and professional awareness of RSD/CRPS, a painful neurological syndrome that may affect more than 1.5 million Americans.

Retinitis Pigmentosa (RP)

Retinitis Pigmentosa International - Under one roof, RP INTERNATIONAL offers facilities for demonstrating the latest in visual aids for the partially sighted. Information and Referrals are available.

Rett Syndrome

International Rhett Sydrome Association - The International Rett Syndrome Association's mission is to support and encourage research to determine the cause, treatment and cure; to increase public awareness of Rett syndrome, and to provide informational and emotional support to families of children with Rett syndrome.

Osteogenesis Imperfecta

Osteogenesis Imperfecta Foundation - The Osteogenesis Imperfecta Foundation's mission is to improve the quality of life for individuals affected by OI through research to find a cure, education, awareness, and mutual support.  Osteogenesis Imperfecta (OI) is a genetic disorder characterized by bones that break easily, often from little or no apparent cause. A person with OI can break a rib while coughing, or a leg by rolling over in their sleep.

Ostomy

The United Ostomy Association, Inc. - The United Ostomy Association 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.

Oxalosis and Hyperoxaluria

The Oxalosis and Hyperoxaluria Foundation - The mission of the Oxalosis and Hyperoxaluria Foundation (OHF) is to seek the cause, improve the clinical treatment and discover the cure of hyperoxaluria and oxalate stone disease and enhance the quality of life of patients and their families.

Pituitary Disorders

Pituitary Network Association - The Pituitary Network Association (PNA) is an international non-profit organization for patients with pituitary tumors and disorders, their families, loved ones, and the physicians and health care providers who treat them.

Polio

Post-Polio Health International - Post-Polio Health International's (PHI) mission is to enhance the lives and independence of polio survivors and home mechanical ventilator users by promoting education, networking, and advocacy among these individuals and healthcare providers.

Prader-Willi Syndrome

Prader-Willi Association - The Prader-Willi syndrome Association's mission is to provide to parents and professionals a national and international network of information, support services, and research endeavors to expressly meet the needs of affected children and adults and their families.

Pseudoxanthoma Elasticum (PXE)

National Association for Pseudoxanthoma Elasticum - Pseudoxanthoma Elasticum, or PXE, is an inherited disorder that affects the skin, the retina of the eyes and the cardiovascular system.

Psoriasis

National Psoriasis Foundation - Psoriasis is a non-contagious, chronic skin disease that comes in different forms and varying levels of severity. Psoriatic arthritis is a form of joint disease that is similar to rheumatoid arthritis.

Reflex Sympathetic Dystrophy Syndrome

Reflex Sympathetic Dystrophy Syndrome Association Of America - The Reflex Sympathetic Dystrophy Syndrome Association of America (RSDSA) is a national not-for-profit organization, headquartered that promotes greater public and professional awareness of RSD/CRPS, a painful neurological syndrome that may affect more than 1.5 million Americans.

Retinitis Pigmentosa (RP)

Retinitis Pigmentosa International - Under one roof, RP INTERNATIONAL offers facilities for demonstrating the latest in visual aids for the partially sighted. Information and Referrals are available.

Rett Syndrome

International Rhett Sydrome Association - The International Rett Syndrome Association's mission is to support and encourage research to determine the cause, treatment and cure; to increase public awareness of Rett syndrome, and to provide informational and emotional support to families of children with Rett syndrome.

Scleroderma

Scleroderma Foundation - The Scleroderma Foundation is the national organization for people with Scleroderma and their families and friends.

Scoliosis

Scoliosis National Foundation - The National Scoliosis Foundation (NSF) is a non-profit organization dedicated to helping children, parents, adults and health care providers with the complexities of scoliosis and related spinal disorders.

Short Stature

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

Sotos Syndrome

Sotos Syndrome Support Association - The Sotos Syndrome Support Association (SSSA) is composed of families, physicians, genetic counselors, and health care agencies throughout the United States.

Speech

Apraxia Kids - Information about speech/language evaluations and how to find an experienced speech and language therapist; articles on therapy techniques written by top therapists; practical ideas and things to do at home; IQ testing and the child with apraxia; prognosis, and more.

Spinal Cord Injuries

Christopher and Dana Reeve Paralysis Resource Center - The Christopher and Dana Reeve Paralysis Resource Center (PRC), a program of the Christopher Reeve Paralysis Foundation (CRPF), was created in 2002 to provide 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. This site has a "kids-only area".

Spinal Muscular Atrophy

Families of Spinal Muscular Atrophy - Families of Spinal Muscular Atrophy is the 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; Educating the public and professional community about SMA

Spina Bifida

Spina Bifida Association of America - The Mission of the Spina Bifida Association of America is to promote the prevention of Spina Bifida and to enhance the lives of all affected.

Stickler Syndrome

Stickler Involved People - Stickler syndrome is a connective tissue disorder, a genetic malfunction in the tissue that connects bones, heart, eyes, and ears. This disorder is associated with problems of vision, hearing, bone and joint, facial and cleft palate, and heart.

Stroke

National Stroke Association - The National Stroke Association (NSA) provides education, services and community-based activities in prevention, treatment, rehabilitation and recovery. NSA serves the public and professional communities, people at risk, patients and their health care providers, stroke survivors, and their families and caregivers.

Sturge-Weber Syndrome

The Sturge-Weber Foundation - The Sturge-Weber Foundation's mission is to improve the quality of life for individuals with Port Wine Stains (PWS), Sturge-Weber Syndrome (SWS) and Klippel-Trenaunay Syndrome (KT). The Foundation strives to meet this goal by providing worldwide education and support and by facilitating research that could ultimately lead to a cure.

Stuttering

Stuttering Foundation of America - The Stuttering Foundation provides free online resources, services and support to those who stutter and their families, as well as support for research into the causes of stuttering.

The National Center For Stuttering - The National Center For Stuttering purpose is: to provide up-to-date factual information about stuttering; to provide a National Stutterer's Hotline; to treat small groups of selected individuals who stutter; to provide continuing education for speech pathologists and, to conduct research into the causes and treatment of stuttering.

Sudden Arrhythmia Death Syndromes

Sudden Arrhythmia Death Syndromes 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

Back to Sleep Campaign - Information on the Healthy Child Care Back to Sleep Campaign.

National SIDS Resource Center - The National Sudden Infant Death Syndrome Resource Center (NSRC) provides information services and technical assistance on sudden infant death syndrome (SIDS) and related topics.

Scleroderma

Scleroderma Foundation - The Scleroderma Foundation is the national organization for people with Scleroderma and their families and friends.

Scoliosis

Scoliosis National Foundation - The National Scoliosis Foundation (NSF) is a non-profit organization dedicated to helping children, parents, adults and health care providers with the complexities of scoliosis and related spinal disorders.

Short Stature

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

Sotos Syndrome

Sotos Syndrome Support Association - The Sotos Syndrome Support Association (SSSA) is composed of families, physicians, genetic counselors, and health care agencies throughout the United States.

Speech

Apraxia Kids - Information about speech/language evaluations and how to find an experienced speech and language therapist; articles on therapy techniques written by top therapists; practical ideas and things to do at home; IQ testing and the child with apraxia; prognosis, and more.

Spinal Cord Injuries

Christopher and Dana Reeve Paralysis Resource Center - The Christopher and Dana Reeve Paralysis Resource Center (PRC), a program of the Christopher Reeve Paralysis Foundation (CRPF), was created in 2002 to provide 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. This site has a "kids-only area".

Spinal Muscular Atrophy

Families of Spinal Muscular Atrophy - Families of Spinal Muscular Atrophy is the 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; Educating the public and professional community about SMA

Spina Bifida

Spina Bifida Association of America - The Mission of the Spina Bifida Association of America is to promote the prevention of Spina Bifida and to enhance the lives of all affected.

Stickler Syndrome

Stickler Involved People - Stickler syndrome is a connective tissue disorder, a genetic malfunction in the tissue that connects bones, heart, eyes, and ears. This disorder is associated with problems of vision, hearing, bone and joint, facial and cleft palate, and heart.

Stroke

National Stroke Association - The National Stroke Association (NSA) provides education, services and community-based activities in prevention, treatment, rehabilitation and recovery. NSA serves the public and professional communities, people at risk, patients and their health care providers, stroke survivors, and their families and caregivers.

Sturge-Weber Syndrome

The Sturge-Weber Foundation - The Sturge-Weber Foundation's mission is to improve the quality of life for individuals with Port Wine Stains (PWS), Sturge-Weber Syndrome (SWS) and Klippel-Trenaunay Syndrome (KT). The Foundation strives to meet this goal by providing worldwide education and support and by facilitating research that could ultimately lead to a cure.

Stuttering

Stuttering Foundation of America - The Stuttering Foundation provides free online resources, services and support to those who stutter and their families, as well as support for research into the causes of stuttering.

The National Center For Stuttering - The National Center For Stuttering purpose is: to provide up-to-date factual information about stuttering; to provide a National Stutterer's Hotline; to treat small groups of selected individuals who stutter; to provide continuing education for speech pathologists and, to conduct research into the causes and treatment of stuttering.

Sudden Arrhythmia Death Syndromes

Sudden Arrhythmia Death Syndromes 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

Back to Sleep Campaign - Information on the Healthy Child Care Back to Sleep Campaign.

National SIDS Resource Center - The National Sudden Infant Death Syndrome Resource Center (NSRC) provides information services and technical assistance on sudden infant death syndrome (SIDS) and related topics.

Tay-Sachs Disease

The National Tay-Sachs & Allied Diseases Association (NTSAD) - The National Tay-Sachs & Allied Diseases Association (NTSAD) is dedicated to the treatment and prevention of Tay-Sachs, Canavan, and related diseases, and to provide 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 Syndrome

Tourette Syndrome Association- The Tourette Syndrome Association’s mission is to identify the cause of, find the cure for and control the effects of this disorder.

Tremor

International Essential Tremor Foundation - The International Essential Tremor Foundation (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.

Trisomy 18,13

Trisomy 18,13 and Related Disorders - S.O.F.T. is a nonprofit volunteer organization offering support for parents who have had a child with a chromosome disorder, and education to families and professionals interested in the care of children with Turner's Syndrome.

Turner Syndrome Society of the United States - The Turner Syndrome Society of the United States works to providing a public forum for communication of state-of-the-art information, exchange of ideas, and social support and strives to increase public awareness of Turner syndrome, its effects, & its possibilities.

Tuberous Sclerosis

Tuberous Sclerosis Alliance - The Tuberous Sclerosis Alliance is dedicated to finding a cure for Tuberous Sclerosis while improving the lives of those affected.

Urea Cycle Disorders

National Urea Cycle Disorders Foundation - The National Urea Cycle Disorders Foundation is a non-profit organization dedicated to the identification, treatment and cure of urea cycle disorders. A urea cycle disorder is a genetic disorder caused by a deficiency of one of the enzymes in the urea cycle which is responsible for removing ammonia from the blood stream.

Vestibular Disorders

The Vestibular Disorders Association - VEDA is a nonprofit organization that provides information to the public about inner-ear balance disorders such as Meniere's disease, BPPV, and labyrinthitis. Symptoms of vestibular disorders may include dizziness, imbalance, vertigo, nausea, and fuzzy vision and may be accompanied by hearing problems.

Visual Impairments

American Council of the Blind - The American Council of the Blind 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 persons 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 - The American Foundation for the Blind 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.

Aurora Ministries - Offers free audio bibles for the blind and print handicapped in approximately 70 languages.

Braille Institute of America - The Braille Institute is a non-profit organization dedicated to eliminating blindness and severe sight loss.

Lighthouse International - Lighthouse International is dedicated to fighting vision loss through prevention, treatment and empowerment.

National Federation for the Blind - Contains information on Braille, guide dogs, convention reports, Legislation for the blind, literature for the blind and other services.

Recording for the Blind & Dyslexic - For more than 50 years, RFB&D has been an invaluable educational resource, enabling those with print disabilities to complete their educations, advance their careers, and gain self-esteem.

Vitiligo

National Vitiligo Foundation - This site was created to serve as a clearinghouse for information about vitiligo, for both people with vitiligo and the general public. Vitiligo is spontaneous irregular depigmentation of skin which can occur at any stage in life.

Von Hippel-Lindau Syndrome

VHL Family Alliance Homepage - Dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by von Hippel-Lindau disease.

Williams Syndrome

Williams Syndrome Association - The Williams Syndrome Foundation (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. The WSF identifies, initiates, funds and provides strategic guidance for major, long-range development projects, either by itself, or by cooperating with other organizations.

Tay-Sachs Disease

The National Tay-Sachs & Allied Diseases Association (NTSAD) - The National Tay-Sachs & Allied Diseases Association (NTSAD) is dedicated to the treatment and prevention of Tay-Sachs, Canavan, and related diseases, and to provide 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 Syndrome

Tourette Syndrome Association- The Tourette Syndrome Association’s mission is to identify the cause of, find the cure for and control the effects of this disorder.

Tremor

International Essential Tremor Foundation - The International Essential Tremor Foundation (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.

Trisomy 18,13

Trisomy 18,13 and Related Disorders - S.O.F.T. is a nonprofit volunteer organization offering support for parents who have had a child with a chromosome disorder, and education to families and professionals interested in the care of children with Turner's Syndrome.

Turner Syndrome Society of the United States - The Turner Syndrome Society of the United States works to providing a public forum for communication of state-of-the-art information, exchange of ideas, and social support and strives to increase public awareness of Turner syndrome, its effects, & its possibilities.

Tuberous Sclerosis

Tuberous Sclerosis Alliance - The Tuberous Sclerosis Alliance is dedicated to finding a cure for Tuberous Sclerosis while improving the lives of those affected.

Urea Cycle Disorders

National Urea Cycle Disorders Foundation - The National Urea Cycle Disorders Foundation is a non-profit organization dedicated to the identification, treatment and cure of urea cycle disorders. A urea cycle disorder is a genetic disorder caused by a deficiency of one of the enzymes in the urea cycle which is responsible for removing ammonia from the blood stream.

Vestibular Disorders

The Vestibular Disorders Association - VEDA is a nonprofit organization that provides information to the public about inner-ear balance disorders such as Meniere's disease, BPPV, and labyrinthitis. Symptoms of vestibular disorders may include dizziness, imbalance, vertigo, nausea, and fuzzy vision and may be accompanied by hearing problems.

Visual Impairments

American Council of the Blind - The American Council of the Blind 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 persons 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 - The American Foundation for the Blind 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.

Aurora Ministries - Offers free audio bibles for the blind and print handicapped in approximately 70 languages.

Braille Institute of America - The Braille Institute is a non-profit organization dedicated to eliminating blindness and severe sight loss.

Lighthouse International - Lighthouse International is dedicated to fighting vision loss through prevention, treatment and empowerment.

National Federation for the Blind - Contains information on Braille, guide dogs, convention reports, Legislation for the blind, literature for the blind and other services.

Recording for the Blind & Dyslexic - For more than 50 years, RFB&D has been an invaluable educational resource, enabling those with print disabilities to complete their educations, advance their careers, and gain self-esteem.

Vitiligo

National Vitiligo Foundation - This site was created to serve as a clearinghouse for information about vitiligo, for both people with vitiligo and the general public. Vitiligo is spontaneous irregular depigmentation of skin which can occur at any stage in life.

Von Hippel-Lindau Syndrome

VHL Family Alliance Homepage - Dedicated to improving diagnosis, treatment, and quality of life for individuals and families affected by von Hippel-Lindau disease.

Williams Syndrome

Williams Syndrome Association - The Williams Syndrome Foundation (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. The WSF identifies, initiates, funds and provides strategic guidance for major, long-range development projects, either by itself, or by cooperating with other organizations.

Americans for Better Care of the Dying - Organization to improve end-of-life care by learning which social and political changes will lead to enduring, efficient, and effective programs. We work with the public, clinicians, policymakers, and other end-of-life organizations to make change happen. ABCD Caring is dedicated to ensuring that all Americans can count on good end of life care.

Centers for Medicare and Medicaid Services - The hospice service benefit is an optional benefit, which States may choose to make available under the Medicaid program. The purpose of the hospice benefit is to provide for the management of the terminal illness and related conditions. Under Federal guidelines, the hospice benefit is available to individuals who have been certified by a physician to be terminally ill. An individual is considered to be terminally ill if he/she has a medical prognosis that his or her life expectancy is 6 months or less. Individuals who meet these requirements can elect the Medicaid hospice benefit.

Children's Hospice International - In 1983, Children's Hospice International (CHI) was founded to provide 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 child and family are included to the fullest degree possible in the decision process about treatment and choices. CHI ensures continuity and consistency of care throughout the coordination of a team of professional support: medical, nursing, psychological, spiritual and trained volunteers, along with other services as appropriate. CHI's hospice care for children and their families is also attentive to needs related to loss and grieving.

Hospice Patients Alliance - Serving hospice patients, families & care givers, the bereaved and hospice staff: promoting quality hospice services that respect the person.

Hospice Search - Searchable database of hospices with webpages.

National Hospice and Palliative Care - Finding the hospice program that meets your needs may take some research, but it will be time well spent. Quality of care, availability of needed services, personnel training and expertise, and coverage provided by the payer all need to be considered. Fortunately, most communities have a variety of hospice providers to choose from.

TRICARE Handbook - The TRICARE Handbook/hospice covers hospice care for terminally ill patients who have prognoses of less than six months to live if the illness runs its normal course. There are no deductibles connected with hospice care. TRICARE pays the full cost of all covered services except for small cost-share amounts.

International Hospice Locator - Locate hospices overseas.

Americans for Better Care of the Dying - Organization to improve end-of-life care by learning which social and political changes will lead to enduring, efficient, and effective programs. We work with the public, clinicians, policymakers, and other end-of-life organizations to make change happen. ABCD Caring is dedicated to ensuring that all Americans can count on good end of life care.

Centers for Medicare and Medicaid Services - The hospice service benefit is an optional benefit, which States may choose to make available under the Medicaid program. The purpose of the hospice benefit is to provide for the management of the terminal illness and related conditions. Under Federal guidelines, the hospice benefit is available to individuals who have been certified by a physician to be terminally ill. An individual is considered to be terminally ill if he/she has a medical prognosis that his or her life expectancy is 6 months or less. Individuals who meet these requirements can elect the Medicaid hospice benefit.

Children's Hospice International - In 1983, Children's Hospice International (CHI) was founded to provide 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 child and family are included to the fullest degree possible in the decision process about treatment and choices. CHI ensures continuity and consistency of care throughout the coordination of a team of professional support: medical, nursing, psychological, spiritual and trained volunteers, along with other services as appropriate. CHI's hospice care for children and their families is also attentive to needs related to loss and grieving.

Hospice Patients Alliance - Serving hospice patients, families & care givers, the bereaved and hospice staff: promoting quality hospice services that respect the person.

Hospice Search - Searchable database of hospices with webpages.

National Hospice and Palliative Care - Finding the hospice program that meets your needs may take some research, but it will be time well spent. Quality of care, availability of needed services, personnel training and expertise, and coverage provided by the payer all need to be considered. Fortunately, most communities have a variety of hospice providers to choose from.

TRICARE Handbook - The TRICARE Handbook/hospice covers hospice care for terminally ill patients who have prognoses of less than six months to live if the illness runs its normal course. There are no deductibles connected with hospice care. TRICARE pays the full cost of all covered services except for small cost-share amounts.

International Hospice Locator - Locate hospices overseas.

Centers for Medicaid and Medicare Services - Information about Medicare Long Term Care.

National Long Term Care Ombudsman Resource Center - Long-term care ombudsmen are advocates for residents of nursing homes, board and care homes, assisted living facilities and similar adult care facilities. Long-term care ombudsmen advocate on behalf of individuals and groups of residents as well as work to effect systems changes. They provide an on-going presence in long-term care facilities, monitoring care and conditions and providing a voice for those who are unable to speak for themselves. Find the ombudsman in your location through this site.

Centers for Medicaid and Medicare Services - Information about Medicare Long Term Care.

National Long Term Care Ombudsman Resource Center - Long-term care ombudsmen are advocates for residents of nursing homes, board and care homes, assisted living facilities and similar adult care facilities. Long-term care ombudsmen advocate on behalf of individuals and groups of residents as well as work to effect systems changes. They provide an on-going presence in long-term care facilities, monitoring care and conditions and providing a voice for those who are unable to speak for themselves. Find the ombudsman in your location through this site.

AAIDD - AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities.

Federation of Families for Children's Mental Health - A national parent-run non-profit organization focused on the needs of children and youth with emotional, behavioral, or mental disorders and their families.

National Guard Psychological Health Program - The National Guard Psychological Health Program is a service that helps Guard members and their families cope when crises arise.

National Alliance for the Mentally Ill - NAMI is the nation's leading grassroots advocacy organization solely dedicated to improving the lives of persons with severe mental illnesses including schizophrenia, bipolar disorder (manic-depressive illness), major depression, obsessive-compulsive disorder, and severe anxiety disorders.

The ARC - The Arc is the national organization of and for people with mental retardation and related developmental disabilities and their families. It is devoted to promoting and improving supports and services for people with mental retardation and their families. The association also fosters research and education regarding the prevention of mental retardation in infants and young children.

AAIDD - AAIDD promotes progressive policies, sound research, effective practices, and universal human rights for people with intellectual disabilities.

Federation of Families for Children's Mental Health - A national parent-run non-profit organization focused on the needs of children and youth with emotional, behavioral, or mental disorders and their families.

National Guard Psychological Health Program - The National Guard Psychological Health Program is a service that helps Guard members and their families cope when crises arise.

National Alliance for the Mentally Ill - NAMI is the nation's leading grassroots advocacy organization solely dedicated to improving the lives of persons with severe mental illnesses including schizophrenia, bipolar disorder (manic-depressive illness), major depression, obsessive-compulsive disorder, and severe anxiety disorders.

The ARC - The Arc is the national organization of and for people with mental retardation and related developmental disabilities and their families. It is devoted to promoting and improving supports and services for people with mental retardation and their families. The association also fosters research and education regarding the prevention of mental retardation in infants and young children.

Children's Organ Transplant Association - This association provides fundraising assistance for children and young adults needing life-saving transplants and promotes organ, marrow, and tissue donation.

Life's Gift Organ Donation Center - Life's Gift Donation Center's mission is to provide community benefit by ethically, effectively and efficiently recovering appropriately transplantable organs and tissue to give the gift of life. This site is just one of many that provides information and resources on organ donation and transplantation issues. You should come back and visit as this site changes periodically to address the organ donation awareness initiatives that are in effect throughout the country and focus on different populations and issues.

Organ Donation - This site provides information and resources on organ donation and transplantation issues. This site was created by:Health Resources and Services Administration (HRSA) Department of Health and Human Services (DHHS).

United Network for Organ Sharing - United Network for Organ Sharing is a private, non-profit 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. Since its inception in 1977, UNOS has helped save the lives of over 215,000 people by coordinating the work of the nation's 272 transplant centers in matching donated organs with the desperately ill patients who need them - 24 hours a day, 365 days a year.

Children's Organ Transplant Association - This association provides fundraising assistance for children and young adults needing life-saving transplants and promotes organ, marrow, and tissue donation.

Life's Gift Organ Donation Center - Life's Gift Donation Center's mission is to provide community benefit by ethically, effectively and efficiently recovering appropriately transplantable organs and tissue to give the gift of life. This site is just one of many that provides information and resources on organ donation and transplantation issues. You should come back and visit as this site changes periodically to address the organ donation awareness initiatives that are in effect throughout the country and focus on different populations and issues.

Organ Donation - This site provides information and resources on organ donation and transplantation issues. This site was created by:Health Resources and Services Administration (HRSA) Department of Health and Human Services (DHHS).

United Network for Organ Sharing - United Network for Organ Sharing is a private, non-profit 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. Since its inception in 1977, UNOS has helped save the lives of over 215,000 people by coordinating the work of the nation's 272 transplant centers in matching donated organs with the desperately ill patients who need them - 24 hours a day, 365 days a year.

Bright Futures - The mission of the new American Academy of Pediatrics website, Bright Futures, is to promote and improve the health, education, and well-being of infants, children, adolescents, families, and communities.

Case for Inclusion Report - This 2007 report by United Cerebral Palsy ranks all 50 States and the District of Columbia on how well they are providing community-based supports to Americans with intellectual and developmental disabilities being served by Medicaid.

Enhancing Health Care Transition for Youth and Young Adults Living with Chronic Medical Conditions and Disabilities - This white paper was produced by Physician-Parent Caregivers, Inc. on behalf of the Coalition for Young Adults Living with Chronic Medical Conditions and Disabilities. The Coalition is committed to enhancing research, training, and reform efforts related to quality health care for youth and young adults living with
chronic medical conditions and disabilities.

Healthfinder - Healthfinder is a free gateway to reliable consumer health and human services information developed by the U.S. Department of Health and Human Services. Healthfinder® can lead you to selected online publications, clearinghouses, databases, web sites, and support and self-help groups, as well as the government agencies and not-for-profit organizations that produce reliable information for the public.

Lab Tests Online - A public resource on clinical lab testing from the laboratory professionals who do the testing.

Medicare - This is the official website for Medicare information and resources.  It also has a Helpful Contacts tool, which provides contact information for specific organizations and helps visitors find the appropriate answer to their Medicare-related questions.  For more information, call 1-800-MEDICARE (1-800-633-4227).

MEDLines Plus Health Information - MEDLINEplus, provides health care information from the world's largest medical library, the National Library of Medicine at the National Institutes of Health. MEDLINEplus is for anyone with a medical question.

National Center for Health Statistics - The National Center for Health Statistics (NCHS) is a part of the Centers for Disease Control and Prevention, U.S. Department of Health and Human Services. To meet priority data needs for public health, NCHS works closely with other Federal agencies as well as researchers and academic institutions. NCHS data systems include data on vital events as well as information on health status, lifestyle and exposure to unhealthy influences, the onset and diagnosis of illness and disability, and the use of health care. These data are used by policymakers in Congress and the Administration, by medical researchers, and by others in the health community.

NIH Health Information - The National Institute of Health's gateway links you to federal agencies resources.

Special Care Organizational Record (SCOR) - A tool to help those with Exceptional Family members organize, track and manage the various details of their specialized health care and needs.

Special Care Organization Record (SCOR) for Eldercare - A tool designed to facilitate the care of your older family members by helping organize and manage the various details pertinent to their unique health concerns and needs. 

Bright Futures - The mission of the new American Academy of Pediatrics website, Bright Futures, is to promote and improve the health, education, and well-being of infants, children, adolescents, families, and communities.

Case for Inclusion Report - This 2007 report by United Cerebral Palsy ranks all 50 States and the District of Columbia on how well they are providing community-based supports to Americans with intellectual and developmental disabilities being served by Medicaid.

Enhancing Health Care Transition for Youth and Young Adults Living with Chronic Medical Conditions and Disabilities - This white paper was produced by Physician-Parent Caregivers, Inc. on behalf of the Coalition for Young Adults Living with Chronic Medical Conditions and Disabilities. The Coalition is committed to enhancing research, training, and reform efforts related to quality health care for youth and young adults living with
chronic medical conditions and disabilities.

Healthfinder - Healthfinder is a free gateway to reliable consumer health and human services information developed by the U.S. Department of Health and Human Services. Healthfinder® can lead you to selected online publications, clearinghouses, databases, web sites, and support and self-help groups, as well as the government agencies and not-for-profit organizations that produce reliable information for the public.

Lab Tests Online - A public resource on clinical lab testing from the laboratory professionals who do the testing.

Medicare - This is the official website for Medicare information and resources.  It also has a Helpful Contacts tool, which provides contact information for specific organizations and helps visitors find the appropriate answer to their Medicare-related questions.  For more information, call 1-800-MEDICARE (1-800-633-4227).

MEDLines Plus Health Information - MEDLINEplus, provides health care information from the world's largest medical library, the National Library of Medicine at the National Institutes of Health. MEDLINEplus is for anyone with a medical question.

National Center for Health Statistics - The National Center for Health Statistics (NCHS) is a part of the Centers for Disease Control and Prevention, U.S. Department of Health and Human Services. To meet priority data needs for public health, NCHS works closely with other Federal agencies as well as researchers and academic institutions. NCHS data systems include data on vital events as well as information on health status, lifestyle and exposure to unhealthy influences, the onset and diagnosis of illness and disability, and the use of health care. These data are used by policymakers in Congress and the Administration, by medical researchers, and by others in the health community.

NIH Health Information - The National Institute of Health's gateway links you to federal agencies resources.

Special Care Organizational Record (SCOR) - A tool to help those with Exceptional Family members organize, track and manage the various details of their specialized health care and needs.

Special Care Organization Record (SCOR) for Eldercare - A tool designed to facilitate the care of your older family members by helping organize and manage the various details pertinent to their unique health concerns and needs. 

Medi Lexicon - A dictionary of over 140,000 medical, pharmaceutical, biomedical & healthcare acronyms and abbreviations. Plus medical news and searches for the medical, pharmaceutical or healthcare professionals.

Medi Lexicon - A dictionary of over 140,000 medical, pharmaceutical, biomedical & healthcare acronyms and abbreviations. Plus medical news and searches for the medical, pharmaceutical or healthcare professionals.

TRICARE Extended Care Health Option (ECHO) - TRICARE's ECHO web page contains eligibility and coverage information, a brochure and FAQs.

How Tricare Changes when a Military Member Dies or Retires - Important information about Tricare for individuals who retire from the military or if a member dies.

TRICARE- The TRICARE Handbook is now interactive and available on the TRICARE web site. With this new functionality, users can search for information on the TRICARE benefit either by subject search, or general search. In addition, you can go right to sections in the Handbook using the interactive Table of Contents (TOC), as well as print out the online version in its entirety. The online version will be updated in real time, as changes occur.

TRICARE Reserve Components Health Care - This website provides information on TRICARE coverage for Reserve Components while on military duty and their family members.

TRICARE Standard Handbook - The TRICARE Standard Handbook discusses the TRICARE Standard civilian health care benefit (it also briefly describes the other two TRICARE health care options, TRICARE Prime and TRICARE Extra) for active-duty and retired uniformed services sponsors and their families, for surviving eligible family members of deceased sponsors, and for some former military spouses.

TRICARE Fact Sheet on Appeals -  Provides information for individuals who disagree with certain decisions related to their benefits made by TRICARE Management Activity ( TMA) or by a TRICARE contractor. The appeals process varies, depending on whether the denial of benefits involves a medical necessity determination; a factual determination; provider authorization; provider sanction; and/or a dual-eligible determination.

TRICARE Extended Care Health Option (ECHO) - TRICARE's ECHO web page contains eligibility and coverage information, a brochure and FAQs.

How Tricare Changes when a Military Member Dies or Retires - Important information about Tricare for individuals who retire from the military or if a member dies.

TRICARE- The TRICARE Handbook is now interactive and available on the TRICARE web site. With this new functionality, users can search for information on the TRICARE benefit either by subject search, or general search. In addition, you can go right to sections in the Handbook using the interactive Table of Contents (TOC), as well as print out the online version in its entirety. The online version will be updated in real time, as changes occur.

TRICARE Reserve Components Health Care - This website provides information on TRICARE coverage for Reserve Components while on military duty and their family members.

TRICARE Standard Handbook - The TRICARE Standard Handbook discusses the TRICARE Standard civilian health care benefit (it also briefly describes the other two TRICARE health care options, TRICARE Prime and TRICARE Extra) for active-duty and retired uniformed services sponsors and their families, for surviving eligible family members of deceased sponsors, and for some former military spouses.

TRICARE Fact Sheet on Appeals -  Provides information for individuals who disagree with certain decisions related to their benefits made by TRICARE Management Activity ( TMA) or by a TRICARE contractor. The appeals process varies, depending on whether the denial of benefits involves a medical necessity determination; a factual determination; provider authorization; provider sanction; and/or a dual-eligible determination.