EB Family Day 2026
Thank you to everyone who joined us at our EB Family Day on Sunday 4th October!...
20 October, 2026
Events
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....
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. ...
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....
15 December, 2025
Research the Cure – Immune therapy for RDEB SCC
[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][vc_column_text css=""]Thank you to Prof Jakub Tolar for joining us earlier this month for our final Research the Cure Webinar of the year. Jakub is an internationally recognized physician and researcher, known for his care of patients with RDEB....
04 December, 2025
Butterfly Speaker Lunch 2025
Hosted at Orrery in London’s Marylebone, our Butterfly Speaker Lunch began with champagne on the balcony, followed by a sumptuous three course lunch and the hilarious Stephen Mangan in conversation with Hadley Freeman!...
07 October, 2025
Cure EB Family Day 2025
[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][vc_column_text css=""]Cure EB Family Day is one of the highlights of our year, and this year's event was no exception! Held once again at Timber Lodge at the Queen Elizabeth Olympic Park in London, EB families came together with...
06 October, 2025
Ran, walked or wheeled? Butterfly Run 2025 results
What a fabulous day at the Queen Elizabeth Olympic Park for our Butterfly Run 2025!...