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!...
[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...
What a fabulous day at the Queen Elizabeth Olympic Park for our Butterfly Run 2025!...
Earlier this month, members of our Family Form came together online to discuss how they dress feet...
[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=""]It was wonderful to have Prof Dimitra Kiritsi, Professor of Dermatology at the Aristotle University of Thessaloniki at our Family Forum online last month. As part of her interesting and informative talk, Dimitra outlined the reasons researchers decided...
Mishal Husein and Hadley Freeman kept us captivated at our Butterfly Speaker Lunch, which marked the start of our Big Give week...
[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="1/2"][vc_column_text css=""]Thanks to Dr Joanna Jacków who joined us last week to talk about gene editing in EB. Click on the video to watch an excerpt from the webinar where Joanna explains CRISPR gene editing.[/vc_column_text][vc_column_text css=""]You can read...
We are still buzzing from a fantastic Sunday afternoon spent with other EB families, EB researchers & clinicians at the Queen Elizabeth Olympic Park in London....
Wow! What a fabulous day at the Queen Elizabeth Olympic Park yesterday for our 2024 Butterfly Run!...
Prof Tamai joined us to outline his research into gene-modified blister fluid-derived mesenchymal stromal cells (MSCs) to treat RDEB....