Where can people get more information about rare diseases?
The NIH, which is part of the U.S. Department of Health and Human Services, established ORDR to help advance research focused on rare diseases. To provide patients and their families with timely and reliable information, ORDR and NHGRI have created the Genetic and Rare Diseases (GARD) Information Center. GARD offers a searchable, frequently updated Web site located at: http://rarediseases.info.nih.gov/GARD. If users cannot find what they need using GARD’s Web search feature, they can contact GARD’s information specialists by e-mail at GARDinfo@nih.gov. They can also call GARD at its toll-free number: 888-205-2311 or the international access number: 1-301- 519-3194. The phone lines are answered from noon to 6 p.m. Eastern, Monday through Friday. Requests can also be sent to GARD by fax, 240-632-9164; TTY, 888-205-3223; or by mail, P.O. Box 8126, Gaithersburg, MD 20898-8126. In addition to GARD, there are many non-profit groups that provide information and support, promote research and a
