Our insight studies
DEBRA is the EB patient support organisation and one of the largest funders of EB research globally. Our mission is to provide life-long care and support to the EB community while funding pioneering research to deliver effective treatments for every type of EB. Central to this mission is our commitment to ensuring that people living with EB are always at the heart of everything we do.
To support this commitment, and to ensure that our future plans directly reflect what matters most to our members, DEBRA UK has commissioned a trilogy of insight studies:
- The 2023 EB Insights Study.
- The 2025 EB Priority Setting Partnership Study, which followed the James Lind Alliance research method.
- The 2026 DEBRA Member Services Impact Evaluation.
Together, these studies provide vital insight into the unmet needs of DEBRA’s members, the research priorities of the global EB community, and the effectiveness of our member services. This evidence base is helping to shape our future support and research programmes, ensuring they are guided by the voices, experiences, and priorities of those we are here to support.
The EB insights study identified 7 key issues that the EB community told us had the greatest impact on them. The summary report highlights the key findings and the actions we will take to:
- improve awareness and understanding of all types of EB including amongst GPs and dermatologists and encourage more referrals to EB specialist healthcare centres;
- address the geographical imbalance of EB specialist healthcare;
- provide financial support due to the cost-of-living crisis making the burden of living with EB harder;
- improve the current mental health provision available through the NHS for people living with EB and their carers;
- enable EB patients/carers to get treatment recommendations from other EB patients;
- make DEBRA funding for research towards treatments the top priority;
- increase interaction for EB patients with our Community Support Team.
Insights from the study will help determine the campaigns we run, the research we fund and, most importantly, in determining what we do and how we do it.
EB Priority Setting Partnership Study
Over 800 hundred people, who live with EB, care for someone with EB, or who work with those affected by EB, have told us their top 10 unanswered questions about EB. The global EB community recently took part in online workshops to help us confirm and rank the final top 10 questions.
These questions will become DEBRA’s research strategy for years to come and will influence EB research around the globe.
DEBRA UK led this project with The James Lind Alliance because we believe that our research strategy should be determined by the EB community. Research strategies are often led by the interests of academics and researchers. But we want our research strategy to be led by you – the people living with EB, or caring for loved ones every day, and the professionals that support you.
We partnered with Cure EB, DEBRA Ireland, DEBRA Canada, DEBRA International, and EB Research Partnership for this project, and together have formed an EB Priority Setting Partnership which includes patients and carers affected by EB, and healthcare professionals.
DEBRA Member Services Impact Evaluation report
This independent evaluation provides an important and insightful assessment of the difference DEBRA’s Member Services make today. The findings clearly show the positive impact our support has on quality of life:
- Strengthening community connections.
- Reducing isolation.
- Improving financial stability.
- Enhancing emotional wellbeing.
- Enabling access to specialist healthcare.
It also showed that further focus is needed in our work with healthcare professionals, developing more proactive, tailored support for underserved groups in the EB community, and ensuring everything we do is inclusive for all members.
Our members’ feedback will directly inform DEBRA’s next three year strategy, and we are committed to strengthening and investing in three core areas:
- Improving access to EB specialists.
- Providing emotional and peer support.
- Creating social and community opportunities that bring people together.
They have also highlighted where we need to go further. We will respond by:
- Expanding our outreach to health and social care professionals beyond EB specialists.
- Developing more tailored support for underserved groups, particularly teenagers and young adults.
- Simplifying and clarifying our communications so information is easier to find and inclusive for all members, regardless of EB type, geography, age,
or life stage.
Together, we can move towards a future where EB is better understood, better managed, and far less isolating for everyone it touches.