Research Evening at the Royal Institution
We were delighted to welcome donors, researchers, clinicians and EB families to our Research Evening at the Royal Institution in London...
28 March, 2024
Author: Amy
20 December, 2023
FDA Approves Filsuvez for Junctional and Dystrophic EB
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...
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....
30 November, 2023
Research the Cure webinar – EB-associated squamous cell carcinoma
Prof Andrew South has been researching EB-associated cancer for more than a decade and we were grateful he could join us....
29 November, 2023
Butterfly Brunch London
Thank you to everyone who joined us for our wonderful Butterfly Brunch including our fantastic speakers, Hadley Freeman and Amelia Gentleman....
16 October, 2023
Rigosertib data presented at EADV Congress 2023
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....
28 September, 2023
Cure EB Family Day 2023
It was wonderful to connect with old friends and lovely to meet some new faces at our annual Family Day on Sunday 24th September....
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!...
13 September, 2023
BGC Charity Day 2023
We had an amazing day at BGC Charity Day! Our patron, Damian Lewis, worked the trading floor like a pro...
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....