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     Ectodermal Dysplasia Society


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The Spring edition of the newsletter is available for download in the members section. A new version of the website is under construction and will be available around Spring this year..

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

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.



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



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