The Office of Rare Diseases (ORD) was established in 1993 within the Office of the Director of the National Institutes of Health (NIH). On November 6, 2002, the President established the Office in statute (Public Law 107-280, the Rare Diseases Act of 2002). A rare disease (also called an orphan disease) is a disease or condition affecting fewer than 200,000 persons in the United States. An estimated 25 million people in the United States have a rare disease.

The goals of ORD are to stimulate and coordinate research on rare diseases and to support research to respond to the needs of patients who have any one of the more than 6,000 rare diseases known today. To leverage its resources, stimulate rare diseases research activities, and foster collaboration, ORD works with NIH Institutes or Centers to support (1) a grants program to establish a network for research on rare diseases, including the training of rare diseases researchers, (2) an intramural center for patients with undiagnosed rare conditions, and programs to stimulate clinical research on rare diseases including the training of researchers interested in rare diseases, (3) a scientific conferences program to stimulate research where little exists, where research progress may have stalled, or in response to scientific opportunities; (4) regional workshops to assist patient support groups to become partners with the NIH and better understand NIH research programs and gaining better access to NIH research opportunities, (5) an information center and other information dissemination mechanisms to supply reliable and valid information to the public, researchers, and health care providers, including various databases to provide access to information over the web, and the ORD Web site, and (5) a number of ancillary activities that contribute to furthering research on rare diseases.

For information on rare cancers, please contact the National Cancer Institute's Cancer Information Service (CIS) toll free at (800) 4–CANCER.

Contact for Additional Information
ORD Staff
Office of Rare Diseases
National Institutes of Health
6100 Executive Boulevard, 3B-01
Bethesda, Maryland 20892–7518
Telephone: (301) 402–4336
Fax: (301) 480–9655
ord@od.nih.gov

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ORD Staff

Stephen C. Groft, Pharm.D.
Director
301-402-4336
ord@od.nih.gov

Mary Demory
Director, Public Outreach and Education Program
301-402-4336
ord@od.nih.gov

John H. Ferguson, M.D.
Medical Advisor
301-402-4336
jferguson@healthinfoconsultants.com

Gahl, William, M.D., Ph.D.
Director, Intramural Research Program
301-402-8255
bgahl@helix.nih.gov

Chris Griffin
Program Assistant
301-402-4336
ord@od.nih.gov

Henrietta D. Hyatt-Knorr, M.A.
Director, Policy and Program Planning and Analysis
301-402-4336
ord@od.nih.gov

Giovanna M. Spinella, M.D.
CDR, US Public Health Service
Director, Extramural Research Program
301-402-4336
ord@od.nih.gov