3 Mums, 1 Mountain, 1 Mission
The training has been tough, the climb will be tougher, but they're motivated by the suffering of children like Poppy, Sohana and Darcy who are challenged by EB everyday....
10 June, 2026
Living with EB
28 October, 2025
What to know this EB Awareness Week
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'....
26 June, 2025
Cure EB Family Forum Foot Hackathon
Earlier this month, members of our Family Form came together online to discuss how they dress feet...
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....