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....
28 September, 2023
Author: Amy
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....
15 July, 2023
Sohana is 21!
Our beautiful Sohana turns 21 today. Since she was born her dark, curious, intelligent, humorous eyes have bewitched us. Happy Birthday gorgeous girl!...
26 June, 2023
BSGCT Annual Conference 2023
Cure EB founder Sharmila Collins was delighted to be asked to present at the BSGCT annual conference....
25 May, 2023
Research the Cure webinar – Be Prepared
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....
22 May, 2023
FDA approves Krystal Bio’s B-VEC for DEB
The FDA has approved the use of Krystal Biotech's B-VEC (Vyjuvek) in patients with dystrophic epidermolysis bullosa (DEB), both recessive and dominant, aged 6 months or over....
04 April, 2023
To the Point Research Update Evening
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....
01 March, 2023
Research the Cure webinar – EB research landscape
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....