Author: Amy

[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 everyone who joined us for our fabulous Butterfly Speaker Lunch in London on Tuesday.  Following champagne on the terrace, guests were treated to a three course lunch while Mishal Husain and Hadley Freeman kept...

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!...

[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]We were delighted to have Prof Katsuto Tamai from Osaka University to talk about his novel approach to treating severe dystrophic epidermolysis bullosa. Prof Tamai outlined his research into gene-modified blister fluid-derived mesenchymal stromal cells (MSCs) to treat RDEB.[/vc_column_text][/vc_column][/vc_row][vc_row...

The FDA has approved Chiesi's Filsuvez for partial thickness wounds associated with dystrophic (DEB) and junctional epidermolysis bullosa (JEB) in patients 6 months and older. This follows approval of the treatment by the European Commission in June 2022, as well as NICE's recommendation for use...