Recently diagnosed with a rare disease and don’t know where to turn for more information?
Have a loved one with a rare disease and struggling to understand the science behind it all?
Want to hear expertise from another medical professional, in addition to your primary doctor?
Just plain out confused?
GARD can help.
Your disease is rare. It can be difficult to find resources that have extensive, reliable, information on your condition. The Genetic and Rare Diseases Information Center (GARD), sponsored by the National Institute of Health (NIH), tries to make this search easier. GARD takes reader’s questions, answers them with a staff of medical professionals, and posts them as a resource for others (at the asker’s discretion). Information Specialists utilize NIH resources, medical textbooks, journal articles, medical databases, and other reliable resources to keep the site up to date.
Chances are, someone else has had the same question you have. But, if you can’t find what you’re looking for, just give the center a call. Information Specialists can be reached Monday- Friday from 12:00pm-6:00pm Eastern Time. You can also email your question or send it in by mail or fax. You’ll be given an answer in about 10 days, and if your question is urgent, you could even receive a response within 24 hours.
PO Box 8126
Gaithersburg, MD 20898-8126
International number: 301-251-4925
E-mail form: https://rarediseases.info.nih.gov/about-gard/contact-gard
In addition to information about diseases, GARD provides advice for patients on finding a specialist, getting involved in research, and financing their treatments. GARD also offers support for patients and their families.
All of GARD’s resources are available in English and in Spanish.