Males Affected by HED Needed for Research Project at the Family Conference!!!

Dear NFED Family,

In a research collaboration planned for the 2011 National Family Conference, Edimer Pharmaceutical, Inc. will be working with the NFED to characterize skin properties in male siblings affected by HED and unaffected male controls using skin assessment techniques.  As part of the proposed study, families with at least one HED-affected son will be offered the opportunity to have genetic testing done by a nationally-recognized testing laboratory.

This study in affected HED males and unaffected male controls, age 1 year and up, will use minimally invasive devices to image sweat ducts in intact skin and to measure stimulated sweat rate. Priority will be given to families that contain multiple siblings with at least one affected by HED (i.e. two brothers). More information on participation and potential travel support opportunities will be forthcoming.

In an ongoing effort to provide novel insights into HED, Edimer will also be giving an update at this year’s Family Conference on plans for future studies of XLHED therapy, in addition to a report of new results from last year’s Family Conference study.

Edimer Pharmaceuticals is a biotechnology company located in Cambridge, MA, that is dedicated to bringing into clinical trials a new treatment for HED.

If you are interested in participating in this research, please email me or call me at 618-566-2020.

Mary Fete, R.N., M.S.N., C.C.M.

Director of Research

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