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Improve the support for EB
As well as funding research to find treatments and cures for EB in the future, DEBRA supports those affected by EB today. Our EB Community Support Team works with families and individuals at all stages of life, providing financial, emotional, and practical support and signposting. We provide grants to make it easier for our members to have the things they need to live better with EB. We offer our members subsided holiday homes as safe places to take a break. And we put on events that allow members to connect with each other.
There are many teams and projects at DEBRA that underpin this work and make it possible to provide this support. We try and ensure that all our work has members at the centre. Please use your lived experience of EB to influence the projects below and ensure that DEBRA is always here for you.
The projects below often change, so please keep checking back.
Every year we host DEBRA’s “Members’ Weekend”, out biggest and most popular event. It’s a chance for our members to get together each year to share news, experiences and support, and to meet other people living with EB. It’s also a chance for our members to meet specialists from the EB Community, the DEBRA team, and to hear about the latest news and research about EB.
It’s essential that Members’ Weekend is as relevant and accessible to as many members as possible, so we need your help to design and plan it, whether or not you can attend yourself. We share as much as possible of the news and talks after the event online, so please help us make it relevant to you.
Please take five minutes to answer our key three questions about Members’ Weekend here, or send us your ideas membership@debra.org.uk.
- What workshops/sessions/talks/specialists would you most like to see at Members’ Weekend?
- What are the biggest challenges when attending Members’ Weekend? What ideas do you have that would help reduce these?
- What is the best way for us to help you meet other members at Members’ Weekend?
DEBRA International – the central body of the international network of DEBRA’s around the world – produce information leaflets for people who are either living with or caring for somebody with EB, or for healthcare professionals working with people affected by EB. These are guidelines to show the sort of care and treatments that people living with EB should expect to receive.
As an EB expert by experience, you can review this information and provide DEBRA International with feedback that will improve those documents for everyone living and working with EB.
Over 50% of DEBRA’s Board of Trustees are people with lived experience of EB, either living with the condition themselves, or close family members and carers. We are always looking for members who are interested in being a part of our Board or one of our Committees to help steer DEBRA and guide the decisions we make. We look for a mix of skills and experiences from the people on these committees, but you don’t have to have carried out a board-level role before. Your lived experience of EB is vital to ensure that we’re keeping members’ experiences at the heart of what we do.
Find out more about how we are governed and how to apply to become a trustee.