EB Family Day 2026

Thank you to our EB community for joining us at our annual EB Family Day on Sunday 4th October at Timber Lodge at the Queen Elizabeth Olympic Park in London. It was a fabulous afternoon with EB families, researchers and clinicians discussing all things EB research and enjoying each other’s company, alongside plenty of games and activities for the kids too.

We are so grateful to this year’s speakers Prof John McGrath, Prof Jemima Mellerio, Dr Joanna Jacków-Malinowska, Aidin Kazemizadeh, Mr Ricardo Tejero-Trujeque and Andrea Cudazzo for insights into ongoing research and current treatment options for EB.

Thank you too to the researchers who joined our Q&A panel.

John outlining what’s available for EB patients and what’s on the horizon

Jemima telling us about an upcoming decorin clinical trial

Joanna & Aidin on why they’re collecting EB blister fluid and how this could help with gene editing research

Ricardo & Andrea on the benefits and risks of hand surgery

Did you join us?

Thank you most of all to all the EB families that joined us! We’d love to see you at another of our events (in person or online) again soon.

If you haven’t already, please complete the short feedback form about the event that has been emailed to you so that we can keep improving our community events.

Can you spot yourself in our photos? We’d love to see your photos of the day too – please tag us if you’re sharing online, or send them to us.

Want to keep in touch with the community? If you or a family member have EB, join our Family Forum – it’s free to join and is designed by and for people with EB and their families. You’ll be amongst the first to hear about next year’s Family Day as well as other events for EB families throughout the year.