Guest guest Posted July 28, 2004 Report Share Posted July 28, 2004 > Tori, > > Get thee to the NIH for this, they are in the midst of an important study > right now that you can get on board with. > > email: francomanocl@m... > phone: > > Jill Jill -- would you locate the study protacols number for us - Or tell us the name of the study please ? I'm new to your group - and just searched the NIH listings for either " ehlers danlos " ( no results ) and " connective tissue " - where none of the results returned seemed related to EDS . My local rheumatologist is currently searching for a specialist to refer me too , and I have been assisted by Dr Heiss a chiari neurosurgon at NIH previously as someone already in an odd pickle with both chiari and multiple sclerosis confirmed prior to my additional eds diagnosis . I'd love to gain help on the EDS overlay from NIH - they were VERY helpful in my prior quandry ! thanks - I wish I could have found the study you mention on my own -- deep sighs - at least I tried ! in Paradise '' Quote Link to comment Share on other sites More sharing options...
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