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Genetics
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Division of Cancer Epidemiology and Genetics, National Cancer Institute
The responsibility of this division of the National Institutes of Health is to conduct population based research on environmental and genetics determinants of cancer. Interdisciplinary studies are con... Details >
Health Resources and Services Administration Information Center
The HRSA Information Center is a nationwide point of entry for publications, resources and referrals on health care services for low-income, uninsured individuals and those with special health care ne... Details >
National Center for Biotechnology Information, National Library of Medicine
Established in 1988 as a national resource for molecular biology information, NCBI creates public databases; conducts research in computational biology; develops software tools for analyzing genome da... Details >
National Human Genome Research Institute, National Institutes of Health
The National Human Genome Research Institute (NHGRI) led the National Institutes of Health's contribution to the International Human Genome Project, which had as its primary goal the sequencing of th... Details >
National Institute of Child Health and Human Development, National Institutes of Health
The National Institute of Child Health and Human Development (NICHD) conducts and supports basic and clinical research in maternal and child health and the population sciences. It will respond to ind... Details >
National Institute of General Medical Sciences, National Institutes of Health
The National Institute of General Medical Sciences (NIGMS) is one of the National Institutes of Health, the principal biomedical research agency of the United States Government. NIGMS primarily suppor... Details >
National Library of Medicine, National Institutes of Health
The National Library of Medicine (NLM) was established in 1836 as the library of the Army Surgeon General's Office. It was transferred to the Department of Health, Education, and Welfare and became k... Details >
National Office of Public Health Genomics- Centers for Disease Control and Prevention
The mission of the National Office of Public Health Genomics (NOPHG) is to integrate genomics into public health research, policy and programs. The office provides assistance to public health professi... Details >
Office of Cancer Information Products and Systems
The Office of Cancer Information Products and Services manages the production of evidence-based information summaries on cancer topics including treatment, screening, prevention, genetics, supportive ... Details >
Office of Rare Diseases, National Institutes of Health
The Office of Rare Diseases (ORD) was established in 1993 at the National Institutes of Health. ORD provides information on rare diseases and research; supports scientific conferences; cosponsors, wi... Details >
Acid Maltase Deficiency Association 
The AMDA, Acid Maltase Deficiency Association, was formed to assist in funding research and to promote public awareness of Acid Maltase Deficiency, a rare genetic disease. It is also known as Pompe's... Details >
American Society of Human Genetics
The American Society of Human Genetics (ASHG) was established in 1948 to provide leadership in research, education and service in human genetics. ASHG is one of several human genetics societies and or... Details >
A-T Children's Project
The A-T Children's Project was established to raise funds to support and coordinate biomedical research projects, scientific conferences and a clinical center aimed at finding a cure for Ataxia Telang... Details >
Birth Defect Research for Children, Inc.
Birth Defect Research for Children provides information and support to families of children with birth defects. BDRC sponsors research on birth defects caused by exposures to environmental agents--dr... Details >
Center for Jewish Genetic Diseases
The Center for Jewish Genetic Diseases at The Mount Sinai Medical Center in New York City is the first center in the world devoted to the study of diseases that affect Ashkenazi Jews. Established in 1... Details >
Children's Blood Foundation
The Children's Blood Foundation (CBF) was founded in 1952 as a philanthropic organization to support the Division of Pediatric Hematology and Oncology. The Division of Pediatric Hematology and Oncolo... Details >
Children's PKU Network
Children's PKU Network is a nonprofit agency founded in 1991 by the parents of a child diagnosed with PKU (Phenylketonuria). The agency offers support through various programs to assist families with... Details >
Cystinosis Foundation
The Cystinosis Foundation is a nonprofit organization formed with the objectives of raising awareness among the general public and the medical community, as well as raising funds for research into the... Details >
Fanconi Anemia Research Fund, Inc.
Fanconi Anemia Research Fund, Inc., is a nonprofit corporation established in 1989. The purpose of the corporation is to assist Fanconi Anemia (FA) scientific research efforts. The Fund offers famil... Details >
Genetic Alliance
Genetic Alliance increases the capacity of genetic advocacy organizations to achieve their missions and leverages the voices of millions of individuals and families living with genetic conditions. We ... Details >
Hereditary Disease Foundation
The Hereditary Disease Foundation focuses on Huntington’s disease, a fatal, autosomal-dominant neurological illness causing involuntary movements, severe emotional disturbance and cognitive decline. B... Details >
Human Growth Foundation
The Human Growth Foundation (HGF) is a national organization of volunteers concerned with child growth abnormalities, specifically dwarfism of all forms, whether caused by pituitary growth hormone def... Details >
International Joseph Diseases Foundation, Inc.
Established in 1977 as a not-for-profit voluntary organization, the International Joseph Diseases Foundation is dedicated to assisting individuals who are affected by or may be at risk for Joseph Dise... Details >
KS&A - Klinefelter Syndrome and Associates
KS&A’s mission is to help individuals with one or more extra X and/or Y chromosomes and their families lead fuller and more productive lives.... Details >
Lowe Syndrome Association, Inc.
The Lowe Syndrome Association, Inc. (LSA) fosters communication among families of boys with this genetic disease. LSA provides information on the syndrome and supports research. It also sponsors con... Details >
March of Dimes Birth Defects Foundation
The March of Dimes Birth Defects Foundation was established in 1938. Its mission is to improve the health of babies by preventing birth defects and infant mortality. The mission is carried out throu... Details >
Myelin Project
The Myelin Project is a non-profit organization, the goal of which is to accelerate research on the remyelination of the central nervous system. Successful research in this area will help those suffer... Details >
National Ataxia Foundation
The National Ataxia Foundation (NAF) is a non-profit organization established in 1957. The Foundation is dedicated to improving the lives of persons aaffected by ataxia through support, education and ... Details >
National Birth Defects Center
Established in 1984, the Center provides diagnosis and treatment to children born with Birth Defects, Genetic Diseases and Mental Retardation. The Center consists of physicians and consultants in pedi... Details >
National Foundation for Ectodermal Dysplasias
The National Foundation for Ectodermal Dysplasias, (NFED), was organized in order that accurate information on ectodermal dysplasias (ED) would be available to patients and their families dealing with... Details >
National Fragile X Foundation
The National Fragile X Foundation unites the fragile X community to enrich lives through educational and emotional support, promote public and professional awareness, and advance research toward impro... Details >
National Gaucher Foundation
The National Gaucher Foundation (NGF), founded in 1984, is a nonprofit organization whose primary objective is to help in finding a cure and viable treatment program for Gaucher's Disease (GD). NGF a... Details >
National Marfan Foundation
The National Marfan Foundation was founded in 1981 by patients and families of patients with Marfan Syndrome, a genetic disorder of the connective tissue. The organization has three goals: to educate... Details >
National MPS Society, Inc.
The National MPS Society exists to find cures for MPS and related diseases. We provide hope and support for affected individuals and their families through research, advocacy and awareness of these d... Details >
National Niemann-Pick Disease Foundation, Inc.
The purpose of the National Niemann-Pick Disease Foundation, Inc., is to provide medical and educational information to assist in the correct diagnosis and referral of children with Niemann-Pick Disea... Details >
National Reference Center for Bioethics Literature, Joseph and Rose Kennedy Institute of Ethics
The National Reference Center for Bioethics Literature (NRCBL) is a specialized, non-circulating collection of over 27,000 books, and over 200,000 articles culled from journals, legal publications, re... Details >
National Society of Genetic Counselors
The National Society of Genetic Counselors (NSGC), formed in 1978, is a leading voice, authority and advocate for the genetic counseling profession. NSGC promotes the genetic counseling profession as... Details >
National Tay Sachs & Allied Diseases Association, Inc.
National Tay Sachs & Allied Diseases Association (NTSAD) is the oldest genetic disease organization in the United States. NTSAD, its chapters and affiliates work for the prevention of Tay-Sachs and r... Details >
Neurofibromatosis, Inc.
Neurofibromatosis, Inc., is a nonprofit organization that provides individuals and families affected by neurofibromatosis (NF) and related disorders with information on the disorder, referrals to phys... Details >
Noonan Syndrome Support Group, Inc.
This international organization gives its members an opportunity to share experiences and exchange ideas on how to cope with Noonan Syndrome. The NSSG offers forums where physicians and other profess... Details >
Osteogenesis Imperfecta Foundation, Inc.
The Osteogenesis Imperfecta Foundation is a voluntary national health organization dedicated to improving the quality of life for individuals affected by OI through education, awareness, mutual suppor... Details >
Rubinstein-Taybi Parent Group
The Rubinstein-Taybi Parent Group was established in 1984 to provide a support network for parents of children with Rubinstein-Taybi syndrome. Rubinstein-Taybi syndrome, or broad-thumb-hallux syndrom... Details >
Stickler Involved People
Stickler Involved People (SIP) is a national network whose purpose is to increase awareness of Stickler syndrome by educating medical professionals, educators, and people with Stickler syndrome and th... Details >
Support Organization for Trisomy 18, 13 and Related Disorders
Support Organization for Trisomy 18, 13 and Related Disorders (SOFT) is a network of families and professionals dedicated to providing support and understanding to families involved in the issues and ... Details >
The Children's Tumor Foundation
The Children's Tumor Foundation: Ending Neurofibromatosis Through Research (formerly known as the National Neurofibromatosis Foundation), provides neurofibromatosis patients and their families with in... Details >
Tuberous Sclerosis Alliance
The Tuberous Sclerosis Alliance (TSA), formerly the National Tuberous Sclerosis Association (NTSA), was established in 1974 to provide fellowship, generate awareness, pursue more knowledge and provide... Details >
United Leukodystrophy Foundation
The United Leukodystrophy Foundation (ULF), incorporated in 1982, is a nonprofit, voluntary health organization dedicated to providing patients and their families with information about their disease ... Details >
Williams Syndrome Association, Inc.
The Williams Syndrome Association, Inc., is a national, non-profit organization whose purpose is to provide support and the latest medical and educational information to individuals with Williams Synd... Details >
Wilson's Disease Association
The Wilson's Disease Association is a volunteer organization whose purpose is to give aid and support to victims of Wilson's disease and related disorders of copper metabolism, such as Menkes' disease... Details >
Xeroderma Pigmentosum Society
The Xeroderma Pigmentosum Society was founded to raise awareness about XP, a life-threatening, sun-sensitive, genetic disorder; to provide support to patients and their families through information, p... Details >