The FDA has approved Chiesi's Filsuvez for partial thickness wounds associated with dystrophic (DEB) and junctional epidermolysis bullosa (JEB) in patients 6 months and older. This follows approval of the treatment by the European Commission in June 2022, as well as NICE's recommendation for use...
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....
Prof Andrew South has been researching EB-associated cancer for more than a decade and we were grateful he could join us....
Thank you to everyone who joined us for our wonderful Butterfly Brunch including our fantastic speakers, Hadley Freeman and Amelia Gentleman....
Data on the use of rigosertib in patients with RDEB-associated squamous cell carcinoma was presented at the European Academy of Dermatology and Venerology (EADV) Congress last week....
It was wonderful to connect with old friends and lovely to meet some new faces at our annual Family Day on Sunday 24th September....
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 had an amazing day at BGC Charity Day! Our patron, Damian Lewis, worked the trading floor like a pro...
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....
Our beautiful Sohana turns 21 today. Since she was born her dark, curious, intelligent, humorous eyes have bewitched us. Happy Birthday gorgeous girl!...