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DEBRA UK member events


We know how important it is for members of the EB community to be able to connect with each other, to share experiences and tips, to form friendships, and to have some fun, all without having to explain what EB is.
This is why we’ve created a programme of national, regional and online events so that the EB community can connect locally and make vital connections with members in other parts of the country.
Our events also create an opportunity for members to connect with the DEBRA EB Community Support Team and to hear from experts in the field of EB healthcare.
Check our full list of member events
We always plan our events based on what our members want and need. So, if there’s something you’d like to see more or less of, or if you have an idea for a new event, we’d love to hear your suggestions. Please drop us an email at membership@debra.org.uk.
In-person events for DEBRA UK members
Our members live all across the UK. As many don’t live near each other and smaller local events aren’t always practical, we host various regional events to connect members at different times of the year in addition to our Members’ Weekend national event.
Members’ Weekend is our national event, and enables members to connect with other people living with all types of EB. Our next Members’ Weekend will be held on 17-18 May 2025.
This event helps people who may feel isolated and gives an opportunity to share and learn from one another, as well as meeting DEBRA’s EB Community Support Team and EB healthcare and research experts.
It’s also an opportunity for members to have some fun together, in a safe place that caters for the needs of people living with the different types of EB, but where their EB doesn’t need to be explained because everyone gets it and understands each other.
Members’ Weekends typically include EB research updates on the projects that DEBRA UK is funding, workshops with the wonderful EB specialist nurses, member led workshops (last year we had the sock exchange where members shared their suggestions for EB friendly socks and footwear!), and fun activities including crafting workshops, singing, dancing and lots of laughter!
In addition to Members’ Weekend, we host other in-person member events throughout the year. Recent events have included an independence weekend specifically for members aged 18+ in London, and a members connect event in Glasgow.
We also aim to connect with our members at other third-party events and exhibitions such as Naidex, the UK’s leading event for empowering and supporting disabled people.
“It’s important what we learn from the people speaking and the stalls, but the really really important thing is meeting people like us and having those conversations and the sort of conversations you wouldn’t have anywhere else! It’s so lovely to be with these people and to feel like you are part of something. This is the best thing about DEBRA for me”.
– DEBRA UK Member and Ambassador, Vie Portland talking about the importance to her of the DEBRA Members’ Weekend