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dfranke comments on Dying Outside - Less Wrong
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How confident are you of this? I'd be surprised if there weren't some there who understood.
I was listening to an interesting podcast recently with the fellows who founded "patientslikeme.com" I have no idea what the community is like, but it may be an interesting resource you haven't encountered yet.
http://itc.conversationsnetwork.org/shows/detail4118.html