Family Forum – Losartan in RDEB with Prof Dimitra Kiritsi

Online

Prof Dimitra Kiritsi, Aristotle University of Thessaloniki, is joining our Family Forum online to talk about the recently published results of the REFLECT study. In this phase 1/2 clinical trial, losartan was well tolerated by children with RDEB, and the trial provided preliminary evidence of...

Butterfly Speaker Lunch with Mishal Husain and Hadley Freeman

Orrery 55 Marylebone High Street, London, United Kingdom

To launch our Big Give Christmas Challenge week we invite you to our fabulous Butterfly Speaker Lunch at the elegant French restaurant, Orrery, in the heart of Marylebone on 3rd December. We are thrilled to have Mishal Husain, BBC Radio 4 Today programme presenter and...

Research the Cure Webinar – November 2024

Online

Thank you to Chiesi for the provision of an arm’s length educational grant to support this webinar series. Gene editing Dr Joanna Jackow, King's College London, will be joining us for our November webinar to talk about her gene editing research and it's potential for...

Cure EB Family Day 2024

Tickets are no longer available to pre-book. Please email [email protected] to enquire about additional spaces.If you or a family member have EB, then join us for our Family Day Sunday 29th September at the Queen Elizabeth Olympic Park in London! Cure EB Family Day is...

Butterfly Run 2024

Queen Elizabeth Olympic Park, London

It’s time to fly! Cure EB’s Butterfly Run is a celebration of inclusivity taking place at the Queen Elizabeth Olympic Park in London on Sunday 29th September 2024 (previously advertised as Sunday 22nd). We are encouraging as many people of all abilities to run, walk,...

Family Forum – Hand Hackathon

Online

How do you dress your hands to try to minimise scarring, contraction and damage? If you have EB, or care for someone who does, join us for our Hand Hackathon where we can all share our knowledge of how we manage hands. Please note that...

Silver Butterfly Dinner

Our biannual fundraising event, the Silver Butterfly Dinner, is on Thursday 16th May 2024. Save the date for a night of champagne, dinner, entertainment, and auctions! Email us for more information about tickets and tables.

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...