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Rare Diseases
Find an Organization by Health Topic Results: 1-26 of 26 Orgs
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Genetic and Rare Diseases Information Center
The National Human Genome Research Institute (NHGRI) and the Office of Rare Diseases (ORD), created the Genetic and Rare Diseases Information Center to help people find useful information, in English ... Details >
Office of Orphan Products Development, U.S. Food and Drug Administration
The FDA's Office of Orphan Products Development (OOPD) is dedicated to promoting the development of products that demonstrate promise for the diagnosis and/or treatment of rare diseases or conditions.... 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 >
Achromatopsia Network 
The Achromatopsia Network is an information and support network for individuals and families concerned with the rare, inherited vision disorder, achromatopsia, including both rod monochromacy and blue... 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 >
Avenues, A National Support Group for Arthrogryposis Multiplex Congentia
Avenues is a non-profit, national support group for Arthrogryposis multiplex congenita. The group publishes a newsletter twice yearly which allows those who are dealing with arthrogryposis to share t... Details >
Batten Disease Support and Research Association
The Batten Disease Support and Research Association (BDSRA) was formed by a group of families in the U.S. and Canada with a mission to offer emotional support, provide information and referrals, and t... 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 >
Cystinosis Research Network
The Cystinosis Research Network (CRN) is a volunteer, non-profit organization dedicated to supporting and advocating research, providing family assistance, and educating the public and medical communi... Details >
Dysautonomia Foundation
The Dysautonomia Foundation is an international organization created in 1951, to provide services for patients with Familial Dysautonomia, a Jewish genetic disorder. We support a Treatment and Evalua... Details >
Freeman-Sheldon Parent Support Group
The Freeman-Sheldon Parent Support Group is a nonprofit organization that provides information and emotional support to individuals and parents of children with Freeman-Sheldon Syndrome. This syndrom... 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 >
Incontinentia Pigmenti International Foundation, Inc.
Founded in 1995, the Incontinentia Pigmenti International Foundation, Inc. is a non-profit organization of patients, physicians, educators, parents, relatives, and volunteers striving to take leadersh... Details >
Klippel-Trenaunay Syndrome Support Group
The Klippel-Trenaunay Syndrome Support Group's mission is to provide support for K-T Syndrome patients and their families. Their objectives in accomplishing this mission are: to act as a support grou... 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 >
Madisons Foundation
Madisons Foundation is dedicated to improving the quality and quantity of information available to parents of children with rare, life-threatening diseases, and to facilitating effective communication... Details >
MUMS National Parent-to-Parent Network, Mothers United for Moral Support, Inc.
MUMS is a national Parent-to-Parent organization for parents or care providers of a child with any disability, rare disorder, chromosomal abnormality or health condition. MUMS' mission to provide supp... Details >
National Endocrine and Metabolic Diseases Information Service, National Institute of Diabetes and Digestive and Kidney Diseases
The National Endocrine and Metabolic Diseases Information Service (NEMDIS) is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). The NIDDK is part of the Nation... 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 Organization for Rare Disorders, Inc.
The National Organization for Rare Disorders, Inc. (NORD) is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizatio... Details >
National Urea Cycle Disorders Foundation
This non-profit organization is dedicated to the identification, treatment and cure of urea cycle disorders. The National Urea Cycle Disorders Foundation (NUCDF) provides information, education and su... Details >
Pulmonary Hypertension Association
The Pulmonary Hypertension Association (PHA) is a non-profit health organization, serving patients with pulmonary hypertension, their family members and the medical professionals who treat them. Its m... Details >
Shwachman-Diamond America
Shwachman-Diamond America is a nonprofit organized exclusively for charitable, educational and scientific purposes. This organization is established to support and encourage research of SDS by provi... Details >
Shwachman-Diamond Syndrome Foundation
The Shwachman-Diamond Syndrome Foundation (formerly Shwachman-Diamond Syndrome International) is a non-profit group that operates on national and international levels. The purpose of the organization... Details >
Society for Progressive Supranuclear Palsy
This nonprofit organization offers information on progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) and support to persons with CBD, their families, and their caregivers. Throug... Details >
Vasculitis Foundation
The Vasculitis Foundation (Formerly the Wegener's Granulomatosis Association) is a non-profit organization dedicated to providing emotional and informational support to patients with vasculitis, to as... Details >