Wendy White, Founder and President of Siren Interactive, contributes this essay: One in ten Americans is living with a rare disorder, but they are often overlooked in the media, in research circles, and in their local communities. The 2nd Annual Rare Disease Day on Feb. 28, 2009, is an opportunity to change that.
Here is my third post in a series of look-backs at the November 2008 Chronic Disease Care conference in San Francisco. (OK, yes, it’s now January 2009 — I’m savoring the experience, not Twittering it!) The first post was about spreading improvement beyond early adopters, the second was devoted to patient voices, and this will […]
Laura Landro’s column in the Wall Street Journal features a series of profiles of online patient groups like MPDinfo.org and ACOR.org, among others. Now seems like the right time to post some data that I’ve been holding back, waiting for the right opportunity to talk about it publicly.
Online support groups have long been recognized as an important and unique source of medical information and social support for patients. Derek Hansen, Paul Resnick, and Sean Munson at the University of Michigan’s School of Information, are trying to help online support groups create community repositories using wiki software at http://medshelf.org.