DEBRA member Isla Grist and her dogIsla Grist and her dog, Pepper. Isla lives with recessive dystrophic epidermolysis bullosa (RDEB).

We're delighted to share with you the news that since we launched DEBRA’s A Life Free of Pain appeal way back in October-22, we have raised over £5m to help stop the pain of EB.

With the support of many thousands of people from all over the UK and abroad, the appeal, which had the objective of raising funds to accelerate our drug repurposing programme, to fund life-changing treatments, and to continue providing EB community support and healthcare, has successfully achieved its target.

Commenting on the news, DEBRA CEO, Tony Byrne said:

On the behalf of everyone at DEBRA and from the UK EB community I cannot thank you enough.

So many people played their part in making this appeal a success, from the swim team led by our Vice President, Graeme Souness, who swam the English Channel for DEBRA and the many thousands of people who sponsored them, to the EB nurses who jumped out of a plane for DEBRA, our loyal customers who continued to shop and donate goods in our stores, and the guests who attended our events up and down the country plus many more. Everyone has played their part and made a huge difference to thousands of children and adults living with EB.

Thanks to funding raised through this appeal we have commissioned our first drug repurposing clinical trial, and we are confident that more will follow in early 2024. Our mission to stop the pain of EB goes on though, people living with EB need enhanced community support and better access to specialist EB healthcare today, we need to raise awareness of this horrible condition with GPs so that more people are officially diagnosed and referred to specialist EB healthcare, and there are more drugs we need to clinically test as we strive to secure effective drug treatment for every type of EB. So please do stay with us on this journey, together we can BE the difference and transform EB once and for all.

I wish you a very happy and safe Christmas and New Year.