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!...
15 July, 2023
Author: Amy
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....
07 December, 2022
Big Give Christmas Challenge raises over £30,000!
We have surpassed our target of £30,000 in this year’s Big Give Christmas Challenge! We are so incredibly grateful to our supporters...
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!...
12 September, 2022
Filsuvez approved in Great Britain
The UK Medicines and Healthcare Products Regulatory Agency (MHRA) has granted marketing authorization approval for Amryt Pharma’s Filsuvez, a topical gel for the treatment of partial thickness wounds associated with dystrophic and junctional epidermolysis bullosa (EB). Marketing authorization approval is required before a medicine can...