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....
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 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....
In our recent Research the Cure webinar, we were delighted to have Prof John McGrath and Prof Jakub Tolar join us to discuss being prepared for EB treatments, today and in the future....
For the first time since the pandemic, we were able to host a Research Update Evening on 28 March 2023. We were delighted to have Prof John McGrath, Dr Joanna Jacków, and Prof Alain Hovnanian speak at the event....
In the lead-up to Rare Disease Day, we held the first of our new series of research webinars – Research the Cure - with Prof John McGrath....
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!...