Carey,

I like your idea about an independent patient advisory board!

quote from Carey: "I've been thinking along these lines; I think we need an independent patient advisory board; one way to start is an alliance of patients who are serving on org boards now, combined with some who aren't. That way, the orgs could be informed. I serve on the PDF patient advisory board, and feel strongly that I represent all patients that can't be there with me."