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Help for Sufferers of Rare Disorders

Say 'Aaah' | YOUR HEALTH ONLINE

April 16, 2001|Benedict Carey

National Organization for Rare Disorders

http://www.rarediseases.org

Background: The National Organization of Rare Disorders Inc. is a coalition of patient organizations that joined forces in the 1970s and '80s to advocate on behalf of those with "orphan" diseases--disorders so uncommon that the government has set up special incentives to foster research. The Web site is meant to be a place where patients and their loved ones can learn about their diseases and where to go for help.

What Works: Fighting for relief from a rare, mystifying illness is lonely work, and the site quickly provides a community, along with a feeling of larger purpose. Whether you're dealing with a rare chromosomal disorder or mild autism, many of the issues are the same--how to fund research, where to find the best resources, and how to get drugs or supplements that could provide relief but are approved for other diseases. The site's catalog of rare diseases is exhaustive, from fairly well-known afflictions such as cystic fibrosis to rarer conditions such as Ruvalcaba syndrome, which is characterized by short stature, mental retardation and skeletal malformations. A brief, readable description accompanies each, along with several links to other sites and support groups.

What Doesn't: In its attempt to be comprehensive, this site spreads itself very thin. Parents whose children have a rare disease already know the basics; what they really want is the history of the disease, the biology, experimental treatments, where the experts on disease are and what they're doing. You may be able to get this kind of information from the organization's in-depth reports--but you'll have to buy them, sight-unseen. Strangely absent too is any evaluation of the teeming universe of chat rooms and online discussion groups that support many families coping with rare illnesses.

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