Guest Julia59 Posted August 12, 2005 Report Share Posted August 12, 2005 Hi again---------------------- I e-mailed the director (Dr. McDonnell) of the EDS Study at NIH today---and I must have caught her, because she e-mailed me back right away. All the talk about EDS lately---I thought I would update you on the study at NIH.I contacted Dr. Nazli B. McDonnell M.D. Ph.D.Medical GeneticsNational Institutes of HealthNHGRI/NIAShe told me that Dr. Clair Francomano is departing. He is the principal investigator of the study. Dr. McDonnell is trying to works things out to keep the study going. She informed me that I was still on the waiting list and thanked me for touching base.It will be interesting to see how my EDS is tied into all of this----It may not be---who knows........................... It definately would be good to get a full work up by a Doc who knows EDS thoroughly.Julie :0) Quote Link to comment Share on other sites More sharing options...
DancingLight Posted August 14, 2005 Report Share Posted August 14, 2005 Do you know where Dr. Francomono is going by any chance? Just curious? Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted August 14, 2005 Report Share Posted August 14, 2005 No Emily, I have no idea. Dr. McDonnell just said he was leaving.I have never heard of him, nor have I heard of Dr. Mcdonnell until I signed up for the EDS study at NIH.Do you know who Dr. Francomono is? Apparently he played a fairly vital role in the EDS study.Julie-------------:0)--------------------- Quote Link to comment Share on other sites More sharing options...
DancingLight Posted August 14, 2005 Report Share Posted August 14, 2005 Julia,I only know that Dr. Francomono is BIG in EDS...that's all. When I was looking for a geneticist to confirm/disconfirm my EDS III diagnosis, I was in touch with a pathologist/friend at Hopkins who recommended Dr. Francomono (used to be at Hopkings, then went to NIH) and also someone at Hopkins. I ended up seeing someone at Hopkins, which was more than sufficient for my situation...Emily Quote Link to comment Share on other sites More sharing options...
sally Posted August 14, 2005 Report Share Posted August 14, 2005 Hi,Here's the link to NIH Dr. Clair Francomano, I don't know if the email is current. She is a geneticist who studies genetics disorders, EDS is just one of the studies I believe. http://www.grc.nia.nih.gov/branches/lg/hgims/clairf.htmgood luck Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted August 14, 2005 Report Share Posted August 14, 2005 Sally, I believe the issue is the doctor is leaving NIH. nina Quote Link to comment Share on other sites More sharing options...
sally Posted August 14, 2005 Report Share Posted August 14, 2005 I understand the issue, I just thought that she might be interested in contact directly if more information was needed to find out where she might be heading and what she is involved with within studies, etc... sorry Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted August 14, 2005 Report Share Posted August 14, 2005 No sorry is necessary--I wasn't sure if you misunderstood. Nina Quote Link to comment Share on other sites More sharing options...
sally Posted August 15, 2005 Report Share Posted August 15, 2005 Hi Julie,I sent you an email regarding physician information. Please let me know if you did not recieve it so I can try again if you want. I'm not sure if I sent it successfully. Thanks.sal Quote Link to comment Share on other sites More sharing options...
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