RareShare.org: Social networking for the uncommon disorder

RareShare.org, a social networking site for individuals with rare medical conditions, is reporting 35% to 50% growth every month since its July 2008 launch.

The site has more than 1100 registered members and had about 33,000 page views this month.

RareShare may not be or ever become huge, but that doesn't mean it isn't important, co-founder David Isserman told The Industry Standard. "That's the nature of it. It's more a philanthropic venture than a for-profit one."

The site goes by the National Institutes of Health's definition of a rare disease -- less than 200,000 people have the condition. Rare disorders affect around 30 million people in the United States and Europe.

So far, the site has about 750 communities for different rare diseases. They range in size from two to about 40 or 50 members.

"The real purpose is to bring together these patients," Isserman said. "And allow them to share experiences and let other people who have these disorders learn what's working and what's not."

One disorder, systemic capillary leak syndrome, is so rare that only about 100 people are thought to have it worldwide, Isserman said. Fifteen of them, from several different countries, are now members of Rareshare.org.

"We're seeing that people want to connect," Isserman said. "A lot of these diseases out there don't have any support."

Isserman said the site plans to offer more features soon, and they sound interesting. They hope to offer information about published articles, news and research about specific diseases, and add a blogging feature, where members can either privately or publicly keep a journal about their disorder.