Rare Diseases: Sufferers Turn to Web for Help
Americans With Rare Diseases Best at Finding Online Health Info, Support
By Daniel J. DeNoon
WebMD Health News
Reviewed by Laura J. Martin, MD
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Feb. 28, 2011 -- People who have rare diseases -- and their caretakers -- are the savviest seekers of online health information and support, a Pew survey finds.

Health information trails only email and search engines as the main reason people go online. But when using the web to share information and support with others, one group leads the pack: people with rare diseases and their caretakers.

The finding comes from a Pew Research Center survey by Susannah Fox, associate director of the Pew Internet & American Life Project. Fox analyzed data from a national telephone survey of 3,001 adults and from a survey of 2,156 Internet users invited to participate through patient organizations affiliated with the National Organization for Rare Disorders (NORD).

"Peer-to-peer health care is a national trend for the worried well, for people with acute illness, and for those living with chronic conditions, but the people living with rare disease take it to the next level," Fox tells WebMD. "They probably can't find a support group in their community, sometimes not even in their state. The Internet becomes a secret weapon for them."

"More than any other segment of our society, those people are tremendously helped by the Internet," NORD Communications Vice President Mary Dunkle tells WebMD.

Rare diseases are those that affect fewer than 200,000 Americans. Many are far less common than that. Yet taken together, they afflict about 30 million people in the U.S. and 250 million people worldwide.

Even rarer than any single rare disease is a specific treatment for that disease. The FDA has approved some 360 "orphan drugs" -- drugs subsidized with federal funds because the market for them is so small. But these drugs treat only about 200 of the 6,800 diseases known to the National Organization for Rare Disorders.

Doctors who specialize in rare diseases are few. What’s bridging the gap, Fox finds, is online information and support.

"People living with rare disease, their own or a loved one's, have honed their searching, learning, and sharing skills to a fine point," she writes. "What was once a solitary expedition for one person or one family, however, has become a collective pursuit taken on by bands of brothers- and sisters-in-arms who may never meet in person."

Doctors often worry that patients will self-diagnose -- or worse, self-medicate -- based on incomplete or inaccurate information found online. But Fox finds that patients with medical issues overwhelmingly turn first to a medical professional.

"Advice from peers is a supplement to what a doctor or nurse may have to say about a health situation that arises," she says.

When patients or caretakers go online, they check out what they've learned by connecting with other patients/caretakers via social media.