Illustration with several computers during a video conference

The 2023 EB patient insight study was completed by 300+ members of the EB community ad 150+ healthcare professionals.

The insight will help ensure that the services DEBRA offers are fully in-line with the needs of the EB community, and it will highlight the important issues to address:

Carly Fields, Vice Chair of the DEBRA Board and mum to Naomi, 10, who has EB Simplex commented:

“The 2023 EB Insight Study is our most comprehensive patient-centric research to-date, providing us with a baseline of invaluable data from those who know and understand epidermolysis bullosa (EB) best: the EB community.

Over 200 people with different types of EB, over 100 carers, 50 dermatologists, and 100 GPs contributed to the study. Hearing the voices of those with and impacted by EB is critical to our understanding of this debilitating condition.

Responses to the study came from across the UK, from a split of genders and across a range of ages. This diversity of thought confirms and informs our direction of travel in our fight against EB, leaving no-one with EB behind. Further, it will underpin a step-change in our planning and our actions. For example, the responses will guide our frontline services to ensure they are in line with the needs of the EB community and focus our research on the areas that matter most to EB patients.

The Study also provides us with a body of quantitative and qualitative data which serves as a foundation for our national advocacy and lobbying endeavours, while offering pharmaceutical companies the data they need to make targeted progress on treatments. And, ultimately, the findings of this study will inform our search for cures.

This is just the starting point; we will continue to involve the EB community in the next phases to ensure that we get services right for people with EB today and that we increase support and funding to enact change for people with EB tomorrow.”


Download the EB patient insight study