Stop the pain appeal
Our urgent £20m appeal to transform quality of life for people living with epidermolysis bullosa (EB)
For people living with EB, pain is not occasional. It is constant. Relentless. Impossible to escape.
Skin as fragile as a butterfly’s wings.
Wounds that blister and tear at the slightest touch.
Hours of agonising dressing changes. Every day with no respite.
Children afraid of a parent’s hug because even love can hurt.
Families watch the people they love suffer, knowing EB can get worse over time. The toll is physical and emotional: relentless pain, visible wounds, endless care.
Clinicians do all they can, but today’s treatments can only ease symptoms — not stop EB progressing.
There is still only one approved drug treatment — and no cures.
This is life with EB today. But it does not have to be tomorrow. Your support for our £20m Stop the Pain appeal can fund care and support now and research for life-changing treatments.
Your support can ease pain today — and help change the future of EB.
Every gift can help provide specialist care today and drive research into treatments that could heal EB wounds faster, reduce pain and itch, and give families back precious time.
“The pain people with EB endure is almost impossible to imagine. I have met too many people with EB who are no longer with us. EB took everything from them — and the brutal truth is that more lives will be lost unless we urgently fund the treatments needed to slow, stop, and one day end the agony of this devastating condition.
Over the next three years, my mission as DEBRA President is clear: to bring us closer, faster, to a future where no one must live with the relentless pain of EB. But we cannot do it without your support. Your donation can help fund the next generation of EB researchers, test five more potential drug treatments, deepen our understanding of EB, and keep delivering the specialist care and support that makes such a difference to families living with EB today.
Please give whatever you can. Every pound, every gift, every act of support brings us one step closer to stopping the pain of EB — for good.
Thank you.”
– Graeme Souness CBE, DEBRA President
Together, we can invest £20 million over five years to help people with EB live not just longer, but better.
With your support, we can:
- Recruit the next generation of EB researchers — investing £2 million to bring new minds and momentum into the field.
- Test five more potential EB drug treatments — investing £3m to improve the chances of securing an effective drug treatment for each main form of EB.
- Deepen understanding of EB pain, itch, inflammation and prevalence — investing £5 million to target the symptoms that dominate daily life.
- Sustain vital EB care and support services for the next five years — investing £10 million to ensure families are not facing EB alone.
How you can help
You can help stop the pain of EB — funding care and support for today and research breakthroughs for tomorrow.
- Make a donation — fund vital care today and research into EB treatments for tomorrow.
- Fundraise your way — take on a challenge, host an event or rally your community.
- Leave a gift in your will — create a lasting legacy for people affected by EB.
- Share the appeal — help more people understand EB and act now.
- Play the DEBRA lottery — support people with EB and be in with a chance to win £25,000 weekly.
However you support Stop the Pain, you can help bring hope, better treatments and a future free from the pain of EB.