Improve the support for EB
DEBRA doesn’t just fund research for future treatments, we support people living with EB today. Our Community Support Team offers practical, emotional, and financial help at every stage of life. This includes grants, subsidised holiday homes, and events to connect our members.
Behind this are many teams and projects shaped by members’ lived experiences. Your voice helps guide our work and ensure DEBRA continues to meet the real needs of the EB community.
The projects below often change, so please keep checking back!
About the project
DEBRA is developing a guideline on Wound care for people with Epidermolysis Bullosa (EB). This guideline aims to provide trusted, evidence-informed recommendations to support decision-making by people with EB, their families, and healthcare professionals.
The development of the guideline will be overseen by a Guideline Development Group, which holds delegated responsibility from the DEBRA, UK Board. This group will act as an advisory body, providing strategic oversight and reporting to the Board.
A Core Writing Group of subject experts will lead the writing and technical work, and a Lived Experience Advisory Group will be established to ensure the voices of people with lived experience of EB are embedded throughout the process, providing insights and feedback to help shape the guideline from the perspective of those directly affected by EB.
How you can help
We are looking for 10 individuals from the EB community, to form the Lived Experience Advisory Group. This group will provide valuable insights and feedback to ensure the guideline reflects the perspectives of those directly affected by EB. This is a co-creation project, built with and for the EB community.
Role of the Lived Experience Advisory Group:
- Help decide what the guideline should cover, who it’s for, the key questions, and the main goals. They will also rank which outcomes matter most from your own experience.
- Review the evidence and recommendations, focusing on benefits, risks and preferences for treatment.
- The group will guide the creation of an easy-to-understand version of the guideline for the wider EB community.
If you would like to get involved, you will need to meet the following criteria:
- Fluent in English (both written and spoken)
- Aged 18 or older
- Either living with any EB type or a family member/carer of someone with EB
- Willing to commit to attending 2 online Zoom meetings, held this November 2025.
The first Workshop will take place on Thursday 6th November, online via Zoom, 5:30pm – 7pm. Register your interest by 30th October.
About the project
DEBRA is developing a guideline on Complementary, Alternative & Integrative Medicines (CAIMs) for people with Epidermolysis Bullosa (EB). This guideline aims to provide trusted, evidence-informed recommendations to support decision-making by people with EB, their families, and healthcare professionals.
The development of the guideline will be overseen by a Guideline Development Group, which holds delegated responsibility from the DEBRA UK Board. This group will act as an advisory body, providing strategic oversight and reporting to the Board.
A Core Writing Group of subject experts will lead the writing and technical work, and a Lived Experience Advisory Group will be established to ensure the voices of people with lived experience of EB are embedded throughout the process, providing insights and feedback to help shape the guideline from the perspective of those directly affected by EB.
Latest update
We’re excited to share that our Lived Experience Advisory Group is now fully established, with the EB community joining us from across the globe. This international group brings together a representative group of individuals with lived experience. We’ve successfully held our first workshop in July 2025, where our group came together to understand the project in more detail and share their own insights to progress to the next stage.
Every year we host DEBRA’s Members’ Weekend, our 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 need 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.