Latest News – CEDSA

CEDSA Cares Kit

Posted on February 18, 2018 by Meghan Howard

At CEDSA we are committed to improving the quality of life of those impacted by an ectodermal dysplasia syndrome. A new initiative is underway to build a community education resource kit called the CEDSA Cares Kit that parents, individuals and caregivers can use to educate others about ectodermal dysplasia. The goal is to give you […]

NFED Family Conference

Posted on January 18, 2018 Edited January 18, 2018 by Meghan Howard

The National Foundation for Ectodermal Dysplasia (NFED) will be holding its annual conference this year in Portland,Oregon. Themed Bridges to Inspiration, the conference will run July 6-7, 2018 at the DoubleTree by Hilton Portland. Canadians welcome! This is an amazing opportunity for your family to meet others facing the same daily challenges and joys that […]

XLHED Research Update

Posted on October 30, 2017 Edited December 15, 2020 by socdev_admin

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 […]

Castleford Fishing Derby 2015

Posted on May 10, 2017 Edited December 15, 2020 by socdev_admin

Three years ago, when CEDSA was in the very early stages of its foundation, the volunteer committee and the community of the Ottawa Valley came together to help us get our start. With funds raised from the annual fishing derby, held on free family fishing day in Ontario, CEDSA was able to get the help […]

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Have a story you would like to share? Pictures or news about your journey with ectodermal dysplasia are welcome – we all learn from each other’s experiences. Please contact us and send any material you would like us to run in our next eNewsletter.

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