The latest edition of our annual newsletter, The Yearly Ed-Lines, is now available! This year’s newsletter is a heartfelt reflection of everything our ED community has achieved and experienced together. Inside, you’ll find: 💖 Inspirational Stories of hope, courage,...
Jaye’s Hair Journey Part 2 Wow. Wow. Wow. Jaye travelled to Iconic Fckin Hair last week and began her hair mesh integration journey, and the transformation is insane! There is no doubt Jaye was feeling very nervous on the morning, but once she arrived at the...
Why the EDELIFE clinical trials are just for boys We often get asked “Why is it always the boys?” when it comes to the latest research trial. Boys affected by XLHED exhibit the full symptoms Read...
When Harley was one, we took him to see doctors multiple times as his nails were peeling off, his teeth were starting to decay as quickly as they came through and he was suffering from a lot of pain, episodes of which we now know are seizures. We just knew...
Become a Friend of the ED Society Our membership fees have been the bedrock of the ED Society for over 20 years. After careful consideration, we have decided to change from annual membership to monthly contributions and invite you to join us as a ‘Friend of’ the ED...
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The Ectodermal Dysplasia Society
Unit 1 Maida Vale Business Centre
