Living with EB

It's Rare Disease Day! Plus Krystal's Vyjuvek gets a positive opinion from the CHMP!...

Thank you to everyone who joined us at the Butterfly Run on Sunday! Whether you ran, walked or wheeled your way around the course, or were there to cheer someone on, we were delighted to see you there!...

We were delighted to be joined by Peter Marinkovich and Suma Krishnan last week to talk about B-VEC (Vyjuvek), a gene therapy gel approved by the FDA for the treatment of wounds in dystrophic EB....

A seven year old boy with Junctional Epidermolysis Bullosa child received genetically modified skin grafts and almost two years later his skin is functioning as normal. Skin cells were taken from Hassan in 2015 and genetically modified by a group of researchers. The cells were...

Thank you and well done to all the families that took part in Parallel London's 100m, 1k, 5k and 10k races this weekend....