I had a piece in the The Washington Post today about Rareshare.org, a site that helps people with rare diseases form communities.
It's a very simple site that does something very important. People have connected and shared experiences on the site from all over world.
The central character in my piece is an remarkable man in his own right - Arturo Porzecanski, an economics professor at American University, and one of the world's experts on emerging markets.
Porzecanski was diagnosed with a disease called systemic capillary leak syndrome (SCLS). It's scary and can be fatal. Porzecanski has been a patient advocate since the day he was diagnosed. Thanks to him, the NIH is now studying SCLS.
NIH defines a rare disease as something that affects fewer than 200,000 people in the United States. There have only been about 100 known cases of SCLS in the entire world, and about a dozen SCLS patients have found Rareshare.
The cover of the paper's health section has a nice map illustrating how Porzecanski and other SCLS patients from near and far connected through Rareshare.
The Post also hosted a live chat with one of the founders of Rareshare, and Porzecanski.
Also today: My J-School classmate Eric Simons was featured in the San Francisco Chronicle. You can buy his book on Darwin here.
