The purpose of the Ectodermal Dysplasis International Network (EDIN) website is to share information with medical professionals and the group leaders of international ectodermal dysplasia support organisations.

If you have come to this site as an individual who is affected by ectodermal dysplasia, please click on the world map to the right and select the support organisation in your country to find the support and information you are looking for.

EDIN was established in 2007 and is an umbrella organisation facilitating greater collaboration between ectodermal dysplasia organisation leaders around the world working together to assimilate information.

Important Ectodermal Dysplasia News & Information

Clinical Trial for Potential XLHED Treatment Seeking Volunteer Participants

The EDELIFE Clinical Trial is studying a potential treatment for boys affected by XLHED and is looking for volunteers to participate in the study. If you are a pregnant woman (over 18 years old), have a confirmed diagnosis of XLHED and are expecting a boy who also may have XLHED, you may qualify to participate. Learn More.

More EDELIFE News:

The ER-004 in XLHED has recieved the FDA Breakthrough designation. See the press release here