February 2016

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Help for Rare and Undiagnosed Conditions

Trying to get a diagnosis for a perplexing medical condition can be a long and frustrating process. For rare diseases, a diagnosis may take years. NIH’s Genetic and Rare Diseases (GARD) Information Center  features information about thousands of rare diseases as well as resources to help with diagnoses and finding appropriate care.

GARD includes tips and resources for dealing with undiagnosed conditions. Learn how to cope with disorders that have no definitive diagnosis, and locate research programs and helpful organizations.

When a condition is rare, it can be hard to find a health care provider who has experience with many similar cases. You can learn how to find a disease specialist at the GARD website.

If you can’t find the information you need on the website, call toll-free to 1-888-205-2311, or write to GARD at PO Box 8126, Gaithersburg, MD 20898-8126, and an experienced information specialist will help answer your questions.