The Student Voice Prize – Beacon for Rare Diseases The Student Voice Prize is an annual, international essay competition that raises the profile of rare diseases within the medical field, particularly with medical students, nurses and scientists who may have...
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,...
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 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...
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 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...
