EB Awareness Week takes place every year between 25th-31st October. It's an international campaign to increase awareness of epidermolysis bullosa, a rare, genetic skin condition and the 'worst disease you've never heard of'....
Earlier this month, members of our Family Form came together online to discuss how they dress feet...
It's Rare Disease Day! Plus Krystal's Vyjuvek gets a positive opinion from the CHMP!...
Sharmila and Kate were joined by Natasha to host a 'Hand Hackathon' at our July Family Forum. ...
Sharmila and Kate enjoyed getting together with other EB families yesterday at our December Family Forum online event. They discussed our current research projects and the EB research landscape in general....
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....
After a break due to the pandemic, it was wonderful to be back together at the Queen Elizabeth Olympic Park in London – catching up with old friends and meeting some new faces too!...
Sohana talks through what EB is like as a teenager in BBC Three’s Living Differently series....
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...