Welcome to CEDSA

Our mission is to enhance the quality of life of those
impacted by ectodermal dysplasias through education,
service, and support while serving as a national
information and networking resource.

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"Every individual has his own story to tell.
Mine is simply engraved on my skin." – Abde Maziane, who has HED.

Latest CEDSA News & Announcements

XLHED Research Update - Edimer Pharmaceuticals, which was researching the recombinant protein EDI200 to cure XLinked Hypohydriotic Ectodermal Dysplasia XLHED), has unfortunately ceased its work.

The good news comes from Germany, where Professor Holm Schneider, with the support of the hospital where he practices in Erlangen, Germany, is continuing his own work to find a cure for XLHED.

Monies are being raised to finish the Natural History Study, the Newborn Study, and finally to continue with the Prenatal Study. Any amount of contribution, whether big or small will help t...

Tips, Success Stories & Inspiration

Sharing – Care - Kyle is 10-years-old and has X-Linked ED but he doesn't let that stop him from playing sports! Like most Canadian kids, he is a hockey fan and plays in nets as a goalie. He also plays baseball and soccer.

This vest swells up in water and keeps him cool while he plays. His mother Kim says it works so well at keeping Kyle cool, he can play without her worrying and without having to squirt water on Kyle all though a game.

Make your own vest: Kim bought a few of the head bands that have the beads in them (the ones that swell up in the water and stay cool for hours). S...

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