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Rare Diseases
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 >