Help us shape the future of DEBRA’s member services

Four people sit at a table engaged in conversation.

We want to make life better for those living with EB. At the end of 2025, we asked our members if what we do helps you, so that we can plan to deliver the activities that have the most positive impact for the future.

Thank you to everyone who took part in our recent survey and interviews. These are now closed, and we can now share the findings with you.

Your feedback helps us plan and deliver the activities that have the greatest positive impact for the future!

Why your feedback matters

Member views help us:

Understand what’s working well and what could be improved.
Ensure our services focus on what matters most to you.
Strengthen our case for funding to continue providing the support you value.

What we did

1. Online Survey: Surveys took around 15minutes to complete and were completely anonymous and confidential.

2. Interviews and focus groups: Fortia Insight (formerly RSM) spoke to members directly, to build a more detailed picture of our members’ experiences.

Both the survey and interviews have now closed.

Findings

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.

Download the DEBRA Member Services Impact Evaluation – Full report

Download the executive summary

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. Thank you to all of you who have taken part.

Frequently Asked Questions

Below are some answers to common questions about the survey and the work we’re doing. If you have any other questions please feel free to get in touch with the Member Services team on membership@debra.org.uk.

Why are you doing this survey?

We are committed to doing all we can to support anyone living with EB, whether through providing practical information and tips, helping get any financial or practical support in place, or through connecting the EB community to help each other. DEBRA is a charity, and we receive no government funding. We rely on the generosity of donations. We therefore want to make sure that the services we’re delivering to our members are having a positive impact on those living with EB, so that where we spend our time and money makes the biggest impact for our members.

Why is another company doing this work, and not the team at DEBRA?

Fortia Insight (formerly RSM) are highly experienced in conducting these sorts of evaluations for charities and other organisations. Their expertise will help us really pinpoint which of our services we’re doing well, and what we can do more of or do differently in the future.

We’d also like members to feel completely comfortable giving us your feedback on what works, and what doesn’t. With RSM conducting the survey, your answers will be completely anonymous, and DEBRA won’t see your individual answers – we’ll only see the themes of the results from the members as a whole.

What sort of questions will you be asking me in the survey or interviews?

We’ll be asking you about:

Your engagement with DEBRA services
The impact of DEBRA’s support on your life
Areas where improvements could be made

Who can take part in the evaluation?

The survey is open to all DEBRA members with lived experience (that means people living with EB and their families).
Interviews and focus groups are open to all DEBRA members, including those with lived experience as well as professional members.

Will DEBRA see my answers?

We’d like members to feel completely comfortable giving us your feedback on what works, and what doesn’t. With Fortia Insight (formerly RSM) conducting the survey, your answers will be completely anonymous, and DEBRA won’t see your individual answers – we’ll only see the themes of the results from the members as a whole.

All responses will be treated with care and reported anonymously. Your individual answers will not be shared with DEBRA staff.

Will my information and answers be stored anywhere?

Fortia Insight (formerly RSM) will keep survey data and interview transcripts securely until 28 February 2028 – this is two years from when the evaluation ends. It will then be permanently deleted. You can read the full privacy notice here.

What if I need any adjustments to take part?

If you have any accessibility needs or require reasonable adjustments to take part in the survey, an interview or a focus group, please let us know — we’re here to support you.

What are the key dates for this work?