by Susannah Fox | Oct 6, 2008
Andrew Schorr’s recent comment also merits a separate post: I am a 12-year leukemia survivor and very grateful to the ACOR community members who helped me numerous times along the way. I have dedicated my life to creating community online and also, in a...
by Gilles Frydman | Sep 22, 2008
Why have rare diseases been so disproportionally represented in the world of internet-based online medical communities since the early 90s? Is there a unique reason to explain why so many of the rare disease patients understood long before anyone else the importance...
by Susannah Fox | Sep 15, 2008
The National Institutes of Health recently gathered a group of consumers and people who study them. We met off-site at a hotel in Bethesda, which I thought was an apt metaphor for the day’s question: How can NIH better communicate with the public? First, I said,...
by Gilles Frydman | Mar 14, 2008
I am sick & tired of the advice given to people looking for medical information on the internet. All the content evaluation guidelines say the same. Look for sponsorship, currency, factual information and audience. A recent CNN Empowered Patient entry states...
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