Join Us For ICED25

Our ICED25 conference will highlight excellence within the rare conditions field, and prompt discussion, reflection, and action. World-class speakers have accepted an invitation to present their research, including updates on the first recombinant protein therapy...

February is ED Awareness Month

It’s that time of year again—Ectodermal Dysplasia Awareness Month is here! February is recognised globally as ED awareness month, a time where we can all come together to shine a light on Ectodermal Dysplasia (ED), and we need YOU to help make this the most impactful...

Become a Friend of the ED Society

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...

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 BAD We’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 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...

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 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...

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 are seizures.  We just knew...