The Yearly Ed-Lines 2023-2024
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,...
Rare diseases: we need to think about climate change too
CEO and Founder Diana Featured in The Lancet Neurology We are excited to share that our CEO and Founder, Diana, has been featured in the September issue of The Lancet Neurology. Diana appears alongside other leading professionals in the field for their contributions...
Thank you BAD
Thank You BADWe’re thrilled to announce that our new and updated website has been partially funded by BAD, and we’re immensely grateful for their generous grant None of this would have been possible without the incredible support from the British Association of...
Jaye’s Hair Journey Part 2
Jaye's Hair Journey Part 2Wow. 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 salon she...
EDELIFE PRESS RELEASE MAY 2023
THE FIRST BABY TREATED WITH POTENTIAL RECOMBINANT PROTEIN THERAPY IN THE U.S. HAS BEEN BORN ST. LOUIS, May 31, 2023 – A baby boy born this month is the first to receive a recombinant protein therapy in the United States that may correct the symptoms of his rare...
Why the EDELIFE clinical trials are just for boys
Why the EDELIFE clinical trials are just for boysWe 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 more
xlhed-clinical-trials-uk
XLHED Clinical Trials in the UK We are super excited to announce that the clinical site for the EDELIFE XLHED trial is open in Cardiff. WE NEED YOU! Like all clinical trials, the study needs to have enough participants to evaluatethe potential treatment before it can...
We Felt So Scared Until We Came Across the ED Society
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...
Become a Friend of the ED Society
Become a Friend of the ED SocietyOur 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...