Overview: The National Organization for Rare Disorders (NORD) is supported by more than 140 voluntary health organizations serving people with rare disorders and disabilities. (NORD defines a rare or “orphan”disease as one that affects fewer than 200,000 people in the United States). NORD maintains the Rare Disease Database comprising more than 1100 disorders, an Organizational Database, and an Orphan Drug Designation Database.NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
Search Tips: To find information about a particular disease, browse the alphabetical Index of Rare Diseases or search the Rare Disease Database by keyword. To find support groups and other associations, search the Organizational Database by disease or organization name. To learn more about new and experimental drugs, search the Orphan Drug Designation Database.
Information Provided: Each organization record provides the name and contact information, Web address (if available), and mission and services. Each entry in the Rare Disease Database features synonyms for disease name, brief abstract describing the disease, and links to support groups. Disease report abstracts are provided for free, but the full-text version of these reports, which are written by medical writers and reviewed by physicians, must be purchased from NORD. Each orphan drug entry includes the drug name, the trade name, and a brief description of the drug’s role in disease treatment.