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Researching Rare Diseases

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Tuesday, May 27, 2008

When there's the possibility of being affected by a rare or dreaded disease, it's important to find facts quickly. The Web contains a huge amount of health information, but it's not always reliable or accurate.

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Here are some sources to turn to should a scary-sounding illness suddenly arise:

National Institutes of Health ( http://www.nih.gov). Almost all medical funding roads in the United States lead to the NIH in Bethesda. So this is an excellent place to start for any health question. NIH has 27 institutes and centers that provide reliable information, but its site is large and not always user-friendly, so you may have to dig a little. It's worth the effort. Also check NIH Health information, a site that includes the National Cancer Institute Bulletin, PubMed (where you can search scientific abstracts for free and obtain a growing number of full papers, also at no cost) and MedlinePlus (where you can find health information in 40 languages).

National Hansen's Disease (Leprosy) Center. Located in Baton Rouge, this facility is part of the U.S. Public Health Service. Find the latest about leprosy, from the location of clinics to frequently asked questions about this ancient disease.

National Organization for Rare Disorders. This nonprofit group has a searchable database that can help you link to rare disease organizations, plus there's a list of more than 1,100 uncommon illnesses.

Centers for Disease Control and Prevention. The CDC is a hub of information for everything from communicable diseases to travel health.


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