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 to continue the research with EDI200.

The U.S. association, the National Foundation for Ectodermal Dysplasias, and the German/Austrian/Switzerland patient group, Selbsthilfegruppe Ektodermale Dysplasie e.V. are providing support, and the CEDSA board of directors is in discussion regarding the allocation of its annual research funding. Government funding is also being sought. More information and details will be provided in the coming months.

Meet the Newest Member of the CEDSA Board of Directors

CEDSA is proud to announce that Kim Goulding was elected to the CEDSA Board of Directors at the Annual General Meeting held on June 7, 2017. She joins long-serving and dedicated volunteers Dayna Donnelly, Michelle Rickard and Meghan Cross on the board. Kim has been connected with CEDSA since its inception and has been a steady contributor, providing sound advice and support to other families impacted by ectodermal dysplasias. Meet Kim and the rest of the board on our About Us page. Welcome Kim, we are looking forward to working with you!


The International Conference on Ectodermal Dysplasias, ED2018 will be held in city of Murcia (Spain) on 12th and 13th April 2018.