Guest guest Posted May 20, 2004 Report Share Posted May 20, 2004 I met with the head of publications for National Arthritis Foundation yesterday. I had written to the foundation which is located here in Atlanta because they has so much obsolete and misinformation on the web, Q and A and mailout brochures. I brought copies of everything I had from EDNF plus copies of articles from med journals and the Vascular ED-Rom I went over every error and provided correct information. The Director, Dan Kendrick, assured me they would all be corrected (including adding the CEDA , EDS Today and UK website links to their web) Not only that, but the AF distributes a newsletter to professionals in the field plus internists and other health professiohnals. He promised to devote an issue to EDS information!!! He is setting up a meeting with me with the President, Dr. Conn, who is a professor of rheumatology at Emory. I want to talk to him about my idea of having rheumatologists play passive exercise tapes in the waiting rooms instead of having us sit there and freeze in our chairs while waiting to be seen He will also put me in contact with the American College of Rheumatologists .. They do not even include EDS on their list of disorders. I will ask for that and ask them to develop a CME on EDS and add it to the board certification requirements. (I know -unmitigated Chutzpah[colossal nerve]) What else would you like the ACR to consider ? PLEASE send me your ideas ASAP. Also, if there is anything else I can ask the president of Arthritis foundation, what should it be? Really need your input , folks. This is a chance of a lifetime! Judy/Atlanta The Ehlers Danlos National Foundation http://www.ednf.org'>www.ednf.org Quote Link to comment Share on other sites More sharing options...
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