• Family Day 2025

    Cure EB Family Day is a free event for our wonderful EB community to come together, have fun and catch up on the latest EB research news. If you or a family member have EB, then join us for lunch, and then while the adults...

  • Butterfly Run 2025

    Queen Elizabeth Olympic Park, London

    Our Butterfly Run is back on Sunday 5th October 2025 at Queen Elizabeth Olympic Park in London. Book now!Please get in touch ([email protected]) if you are interested in sponsoring the event or being one of our charity partners.

  • Research the Cure webinar – September 2025

    Online

    Development of a personalized stem cell therapy for RDEB delivered by cell suspension Prof Ganna (Anya) Bilousova is joining us to talk about the pre-clinical development of a personalized stem cell therapy for recessive dystrophic epidermolysis bullosa delivered via cell suspension.When? Thursday 25th September 2025,...

  • Brave Wings Festival

    Highgate School North Road, London

    Join us for our Brave Wings Festival on 13th July! Family festival for all ages. We're taking over the Mills Centre at London's Highgate School for crafts, arts, music, film and fun. At the end of day join us for live music on the grass,...

  • Family Forum – Foot Hackathon

    Online

    How do you dress feet to try to minimise damage and scarring and to maintain mobility? If you have EB, or care for someone who does, please join us for our Foot Hackathon - an opportunity for EB patients and carers to share knowledge and...

  • London Marathon 2025

    The TCS London Marathon is an incredible experience! Taking place in April, the route takes in many of London's best landmarks including Buckingham Palace, the Cutty Sark, Tower Bridge and Canary Wharf. If you would be interested in running for Cure EB in 2026, do contact...

  • Research the Cure Webinar – April 2025

    Mission EB Dr Anna Martinez is joining us to talk about Mission EB, the first large-scale stem cell clinical trial in EB. Mission EB was led by Anna at Great Ormond Street Hospital in collaboration with clinicians at Birmingham's Children's Hospital. The trial was funded...

  • 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,...