Gene edited skin in RDEB Join Sharmila Collins as she talks to Prof Fernando Larcher about EBSkinEdit, a gene-edited skin for RDEB, gene editing research funded by Cure EB. This webinar is free to join and open to all with an interest in EB. There...
Family festival for all ages! We are heading back to Highgate School for an even bigger and better, family-focused festival this summer. Join us for a brilliant afternoon of activities for all ages including crafts, games and live music, with food trucks, ice-cream, coffee, cakes,...
Phase III trial for a topical whole body treatment for EB patients with Simplex, Recessive Dystrophic and Junctional EB Join Sharmila as she talks to Dr Robert Ryan, Founder and CEO of Paradigm Therapeutics about a phase III clinical trial for a topical cream they are...
On Sunday 4th October, we'll be back at the Queen Elizabeth Olympic Park in London, for our fun, friendly and inclusive Butterfly Run! Our event has something for everyone - we encourage as many people of all abilities to run, walk, wheel, or whatever they...
An event for EB families EB Family Day If you or a family member have EB, then join us at the Queen Elizabeth Olympic Park on Sunday 4th October! Join us for lunch and then, while the adults hear from the EB experts, the children...
The TCS London Marathon is an incredible experience, and this time it's DOUBLE! Taking place on Saturday 24 and Sunday 25 April 2027 , the route takes in many of London’s best landmarks including Buckingham Palace, the Cutty Sark, Tower Bridge and Canary Wharf. With...