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     Ectodermal Dysplasia Society

 

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The Winter edition of the Newsletter is now avalaible for download in the Members Section along with the Christmas Party 2014 Registration form and 2015 membership form. Irish Family get together Sunday 4th January 2014 between 2-5pm at the Louis Fitzgerald Hotel Naas Road Dublin 22

Supporting a normal lifestyle
The Ectodermal Dysplasia Society is a charity dedicated to improving the health and wellbeing of people whose lives are affected by Ectodermal Dysplasia (ED). We work together with people who have ED, their families, researchers, health and other professionals to develop and share expertise, increase awareness and understanding, and assist with the day-to-day management of ED.

Although the ED Society is based in the UK we support individuals, families and professionals worldwide. If you are international and there is not a support organisation in your country please contact us at diana@ectodermaldysplasia.org

To get the most from this site, we recommend you login to our membership area. Signing up takes just a few minutes but enables you to access more information, read articles and stories or visit our photo gallery.

The Ectodermal Dysplasia Society is a UK registered charity.
Charity No. 1089135. Registered address.

 

 

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Edimer Pharmaceuticals have announced that the first baby boy affected by XLHED has completed the course of EDI200 treatment in

the XLHED Newborn Clinical Trial. The Press Release can be found in the Medical and Research section of our website

or visit http://www.xlhednetwork.com/clinical-trial.php

 

 

 

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