BE the difference for EB campaign banner featuring a DEBRA UK member who has EB and a researcher working in a lab.

2023 was a pivotal year for the epidermolysis bullosa (EB) community. The ‘A Life Free of Pain’ appeal, which so many of you kindly supported and which included DEBRA Vice President, Graeme Souness, swimming the English Channel, brought EB to the public’s attention, and delivered much-needed funding that enabled the first EB drug repurposing clinical trial to be commissioned.

There is still much to do, though.

EB is a rare, genetic skin blistering condition that causes the skin to blister and tear at the slightest touch, resulting in incredibly painful blisters, open wounds, and excruciating itch. People with EB live in constant, debilitating pain and need your support today.


You can BE the difference for people living with EB

BE the difference campaign logo

The objective of the ‘BE the difference for EB’ appeal is to raise £5m by the end of 2024. With this funding we will: 

  • offer specialist mental health counselling and resources to the EB community. 
  • offer more financial grants to the EB community, including funding for specialist products to alleviate EB symptoms, and grants and/or signposting to financial support available to ensure every member can attend their vital EB healthcare appointments. 
  • offer nationwide access to the DEBRA UK community support team, including a programme of regional EB Connect events. 
  • continue to accelerate our drug repurposing programme as we seek to secure effective drug treatments for every type of EB. 

Find out more


With your support, we will continue to invest in the drug repurposing clinical trials that are so important to ensure that in the future there is an effective drug treatment for every type of EB. Your support will also enable us to provide an enhanced programme of EB community care and support that is vital to improve quality of life for people living with EB today.

Please donate today. Every action takes us one step closer to a world where no one suffers with the pain of EB.

Thank you.