DEBRA's Stop the Pain appeal

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.

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:

1. Recruit the next generation of EB researchers — investing £2 million to bring new minds and momentum into the field.
2. 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.
3. Deepen understanding of EB pain, itch, inflammation and prevalence — investing £5 million to target the symptoms that dominate daily life.
4. 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.
• Create a fundraising page — take on a challenge, host an event or rally your community.
• Share the appeal — help more people understand EB and act now.

However you support Stop the Pain, you can help bring hope, better treatments and a future free from the pain of EB.

Learn more about the Stop the Pain appeal here