Author: Amy

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31 March, 2025

This month we held our annual Research the Cure Update Evening with patron Damian Lewis and a fantastic group of speakers and panelists....

28 February, 2025

It's Rare Disease Day! Plus Krystal's Vyjuvek gets a positive opinion from the CHMP!...

17 January, 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=""]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...

25 November, 2024

[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...

02 October, 2024

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....

30 September, 2024

Wow! What a fabulous day at the Queen Elizabeth Olympic Park yesterday for our 2024 Butterfly Run!...

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