London Marathon 2024

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 21 April 2024, find out how to support them below! Rosie Megaw Joe Joseph Daniela Jancikova If you would be interested...

Family Forum – All I Want for Christmas is a Cure

Online

Join us for our last Family Forum event of the year to find out more about what we are working on at Cure EB and let's have an informal chat about EB research generally. Hosted by Cure EB founder, Sharmila, and Community Liaison Officer, Kate....

Butterfly Brunch with Hadley Freeman & Amelia Gentleman

Our Butterfly Brunch is returning for the first time since the pandemic, and we would love for you to join us in London for another stunning speaker event. At Orrery Restaurant, in the heart of London's Marylebone 55 Marylebone High Street, W1U 5RB 11.45am to...

Research the Cure webinar

Online

Prof. Andrew South, Thomas Jefferson University, is joining us to talk about EB-associated squamous cell carcinoma (SCC) in our final Research the Cure webinar of the year.

Cure EB Family Day 2023

Queen Elizabeth Olympic Park, London

If you or a family member have EB, then join us for our Family Day Sunday 24th September at the Queen Elizabeth Olympic Park in London! Cure EB Family Day is for EB families to connect, have fun, and catch up on the latest EB...

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...