DEBRA ambassador Lucy Beall

In June we shared the results of our 2023 EB Insights Study.

The EB insights study identified 7 key issues that the EB community told us had the greatest impact on them. This summary report highlights the key findings and the actions we will take to address these.

Find out what we plan to do to …

  1. improve awareness and understanding of all types of EB including amongst GPs and dermatologists and encourage more referrals to EB specialist healthcare centres;
  2. address the geographical imbalance of EB specialist healthcare;
  3. provide financial support due to the cost-of-living crisis making the burden of living with EB harder;
  4. improve the current mental health provision available through the NHS for people living with EB and their carers;
  5. enable EB patients/carers to get treatment recommendations from other EB patients;
  6. make DEBRA funding for research towards treatments the top priority;
  7. increase interaction for EB patients with our Community Support Team.


Read the full report


We’ll keep you updated as we make changes and put our plan into action.

If you would like to use your experience to help shape the future of our EB services, contact us by email or sign up to our involvement network. We’d love to hear from you.