• Butterfly Run 2023

    Queen Elizabeth Olympic Park, London

    It's Time to fly! Cure EB’s Butterfly Run is a celebration of inclusivity taking place at the Olympic Park in London on Sunday 24th September 2023. We are encouraging as many people of all abilities to run, walk, wheel, or whatever you can do to...

  • Focus on B-VEC – Family Forum, 13th July

    For our first online Family Forum get together, we are delighted to have Suma Krishnan, Founder and President, Research & Development at Krystal Biotech and Peter Marinkovich, Associate Professor of Dermatology at Stanford University and primary investigator of the GEM-3 study, joining us to talk...

  • Research the Cure Webinar

    Online

    Be Prepared! In our second webinar of 2023, we will be joined by Prof John McGrath and Prof Jakub Tolar to discuss what you, as a patient or carer, need in your EB toolkit in preparation for clinical trials. There will be an opportunity to...

  • Radio 4 Appeal

    We will be the featured BBC Radio 4 Appeal charity, spotlighting EB nationwide and the research for treatments which is at the heart of our mission. The appeal will be broadcast on Sunday 14th May at 7.54am and 9.25pm and Thursday 18th May at 3.27pm.

  • London Marathon 2023

    Registration is now closed for this year's TCS London Marathon. However, three amazing runners are taking on the 26 mile challenge for us on 23 April 2023, find out how to support them below! John Halliwell Elspeth West Nicholas Crowson If you would be interested...

  • Research the Cure Webinar

    Online

    In the lead-up to Rare Disease Day, join us on Monday 27th February for the first of our lunchtime Research Webinars. Prof John McGrath will be joining us to talk about the current EB research landscape. The webinar is free to join - click here...

  • Cure EB Family Day

    Our Cure EB Family Day is a chance for EB families to connect with each other, while catching up on the latest EB research news. After a hiatus of three years due to the pandemic, we are delighted to have an opportunity to get our...

  • Cure EB Butterfly Run

    The Butterfly Run is back! After a break due to the pandemic, we are delighted to invite you back to our Butterfly Run at the Olympic Park in London. It’s ‘Time to Fly!’ Cure EB’s Butterfly Run is a celebration of inclusivity taking place on Sunday...