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EDS Study at NIH


Guest Julia59
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Guest Julia59

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 Genetics

National Institutes of Health

NHGRI/NIA

She 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)

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Guest Julia59

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)--------------------- :)

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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

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