EB Family Day 2026
Thank you to everyone who joined us at our EB Family Day on Sunday 4th October!...
20 October, 2026
Author: Amy
19 October, 2026
EB Awareness Week 2026
This year, EB Awareness Week runs from Sunday 25th October to Saturday 31st October. ...
05 October, 2026
Butterfly Run 2026 race results
The sun shone on our Butterfly Runners yesterday! We had a brilliant crowd of runners and supporters join us at the Queen Elizabeth Olympic Park for our annual Butterfly Run. If you took part, check out your race results below!...
30 September, 2026
Research the Cure webinar – Phase III trial for a topical whole body treatment for EB
[vc_row css_animation="" row_type="row" use_row_as_full_screen_section="no" type="full_width" angled_section="no" text_align="left" background_image_as_pattern="without_pattern"][vc_column width="2/3"][vc_column_text] This month our Research the Cure webinar was an information session with Dr Robert Ryan, CEO of Paradigm Therapeutics, regarding their upcoming phase III clinical trial for patients with EB Simplex, RDEB or Junctional non-Herlitz EB. Thank you...
15 June, 2026
Research the Cure – EBSkinEdit
Prof Fernando Larcher joined Sharmila to talk about EBSkinEdit, a translational research project towards a genome editing-based treatment for EB....
10 June, 2026
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....
29 May, 2026
Silver Butterfly Dinner 2026
200 people in a room with one mission, to cure EB. In our 15th year, we held our flagship fundraising event for EB research, the Silver Butterfly Dinner, a special and moving evening. ...
20 May, 2026
MHRA approves Krystal’s Vyjuvek
B-Vec (Vyjuvek) is a topical gene therapy gel which can be applied to DEB wounds....
31 March, 2026
Research Update at the Royal Institution
We were delighted to welcome donors, researchers, clinicians, partners and EB families to our Research the Cure Update Evening in London earlier this month....
02 February, 2026
Cure EB take part in EB 2026 Congress
Cure EB was delighted to be a gold sponsor of EB2026. Attending the congress was a great opportunity to be in the company of brilliant researchers, clinicians, charities, companies and of course and most importantly, families living with EB....