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...
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...
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 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...
