Twenty years on: how far we’ve come in the fight against EB
Twenty years ago, EB reached our TV screens through the Channel 4 documentary, The Boy Whose Skin Fell Off. I remember watching it for the first time, it was raw, painful and deeply human. It showed the reality of living with epidermolysis bullosa (EB) in a way that has stayed with me ever since.
DEBRA was part of that family life then, just as we are today: supporting people, raising awareness, and driving forward a better future for everyone affected.
In 2026, EB returned to screens in the US documentary, A Matter of Time. For me, it was another powerful reminder of the courage it takes to live with EB every single day — one of many moments helping the world understand the condition more clearly.
What makes me so proud to work at DEBRA is that today, the picture looks different. Not because EB has changed, but because, thanks to you, we stand in a very different place than we did in 2004.
Our journey
DEBRA’s story is one I never get tired of sharing. We began in 1978 when Phyllis Hilton set up the world’s first EB patient support organisation after her daughter Debra’s diagnosis. From that moment of courage and care, DEBRA has grown into the UK’s leading EB charity and major global EB funder, supporting people with all forms of EB with practical, emotional and community support.
Together, we’ve helped shape the landscape of EB care and research:
- Funding the first EB nurse
- Identifying the EB gene
- Enabling prenatal testing
- Developing the world’s first EB podiatry training programme
These milestones, along with many others, form the foundations behind the breakthroughs we’re now seeing.
Your support has been at the heart of all of this progress.
New answers — new hope in EB research
This January, The Pharmaceutical Journal highlighted something remarkable: EB research is accelerating faster than ever, with real progress now improving lives.
Because of you, DEBRA is helping to drive:
- Repurposed medicines, with early trial participants reporting reduced pain and wound burden
- Dupilumab trials, showing striking potential to ease the relentless itch of EB — described by specialists as “like a magic bullet”
- The ART‑EB programme, testing multiple medicines in parallel to speed up progress
- Training and developing new EB scientists, securing the future of EB research
These are real, tangible steps forward.
But alongside hope, there is a reality we must keep in view — and one that must change.
“We don’t have a cure for EB, and the hardest part of my job is losing children to this awful disease… Without DEBRA, most of our vital research wouldn’t exist.” — Katie, EB Specialist Nurse
Katie’s words stay with me. They remind us why the pace of progress matters so deeply.
Your impact
Your support makes DEBRA the UK’s largest funder of EB research, with over £24m invested so far. And we’re ready to do more. We won’t stop.
Together, we’ve laid the foundations — funding clinical trials, pioneering early‑stage science, nurturing the next generation of EB researchers — and you help us support people living with EB across the UK every day.
This journey looks different because you are part of it.
And with EB back in the public eye, more than two decades after The Boy Whose Skin Fell Off, it feels like the right moment to reflect on how far we’ve come — and how far we can still go.
Help take progress even further
Every gift — including donations of items to our charity shops — strengthens the work that is changing what’s possible for children, adults and families affected by EB.
Thank you, truly, for everything you have already helped make possible.
Cy Grove, DEBRA UK