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Get Support for Patients with Rare Diseases

Kate Traynor

Diseases affecting fewer than 200,000 Americans are called rare or orphan diseases. About 6,000 diseases are considered rare. The Web sites listed below can help you learn more about these disorders. (NIH Office of Rare Diseases)—The National Institutes of Health offers information on over 6,000 rare diseases. Learn about new research, publications, and ongoing trials. Information about support groups is also available at this site. (National Organization for Rare Disorders, Inc.)—This group describes itself as "a unique federation of more than 140 not-for-profit voluntary health organizations serving people with rare disorders and disabilities." NORD oversees some of the Food and Drug Administration programs that give patients access to investigational new drugs. (Food and Drug Administration)—Under the terms of the Orphan Drug Act, the Office of Orphan Products Development provides incentives for companies to develop drugs that treat rare diseases. FDA also administers grants for clinical research of rare diseases. (Genetic Alliance)—This coalition of health professionals, support groups, and families serves the interests of those who live with genetic disorders. The organization promotes public awareness of genetic diseases and provides information on how to contact government and political groups that influence public policy on genetic issues. (National Human Genome Research Institute)—Even before meeting its goal of mapping the entire human genome, the Human Genome Project will generate important data about genetic diseases. Learn about the project, its ethical implications, and plans for the future. (National Cancer Institute)—Some cancers are considered rare diseases, too. NCI’s CancerNet is an invaluable resource for anyone who has or wants to learn more about cancers. Use this site to learn how specific cancers are treated, look for clinical trials, or locate a support group.