Living with EB

28 February, 2025

Rare Disease Day 2025

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

23 July, 2024

Cure EB Family Forum Hand Hackathon

Sharmila and Kate were joined by Natasha to host a 'Hand Hackathon' at our July Family Forum. ...

06 December, 2023

All I Want for Christmas is a Cure – Family Forum December 2023

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....

25 September, 2023

Butterfly Run 2023 – Fun Times & Run Times!

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!...

18 July, 2023

Focus on B-VEC – Family Forum July 2023

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....

29 September, 2022

Family Day – Community, Fun & the Latest Research

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!...

06 September, 2018

Sohana in BBC Three’s ‘Me & My Butterfly Skin’

Sohana talks through what EB is like as a teenager in BBC Three’s Living Differently series....

11 June, 2018

‘Butterfly child’ given life-saving skin

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...

03 September, 2017