As part of our Charity of the Year series, we shine a spotlight on a different family-centred Irish charity doing vital work for children and families. This time, we’re showcasing the work of DEBRA Ireland. Read on to find out more about the charity and the condition it exists to support.
What is Epidermolysis Bullosa?
If you’ve never heard of Epidermolysis Bullosa (EB), you can count yourself among the lucky ones.
EB is a distressing and painful genetic skin condition that causes the skin layers and internal body linings to separate. This happens because of a breakdown in the natural proteins that hold the skin together, meaning that even the slightest touch can cause severe pain, blistering and sores.
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EB is rare, but its impact is significant. It’s estimated that around 1 in 18,000 babies born in Ireland are affected by EB, and more than 500,000 people are living with the condition worldwide. A Consultant Dermatologist at Our Lady’s Children’s Hospital has described EB as “easily the most debilitating and devastating disease I have ever seen.”
Most devastatingly, EB is currently incurable.
What is DEBRA Ireland?
DEBRA Ireland is a national Irish charity established to provide support services to patients and families living with EB. It also drives research into treatments and, ultimately, a cure for those living with the condition.
Founded in 1988 by patients and families affected by EB, the charity’s focus has never changed. That commitment is reflected in the fact that patient and family representatives continue to sit on DEBRA Ireland’s Board, and their voices help shape decisions about how funds are raised and spent.
DEBRA Ireland provides hope and practical support to those living with EB. Around 300 people in Ireland live with the condition, and DEBRA Ireland supports not only them but also the families who regularly act as their carers.
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How DEBRA Ireland helps families day to day
For families living with EB, everyday tasks that most parents take for granted — bathing, dressing, even a hug — can carry real risk of pain and injury. DEBRA Ireland’s work centres on making these daily realities a little easier to manage, alongside supporting the wider medical and emotional needs of the whole family.
The charity’s support includes practical, emotional and advocacy help for children and adults with EB, as well as ongoing efforts to fund and progress research into better treatments and a future cure.
Why this support matters
Because EB is so rare, many families describe feeling isolated after a diagnosis, often knowing little about the condition and finding few people who understand what daily life with EB actually involves. Charities like DEBRA Ireland play a crucial role in connecting families to specialist knowledge, practical support and a wider community who understand.
FAQs
What is Epidermolysis Bullosa (EB)?
EB is a rare, painful genetic skin condition that causes the skin and internal linings to blister and break down easily, often from minor friction or touch.
Is there a cure for EB?
No. EB is currently incurable, which is why ongoing research and support for affected families are so important.
How common is EB in Ireland?
It’s estimated that around 1 in 18,000 babies born in Ireland are affected by EB, with roughly 300 people living with the condition in Ireland today.
What does DEBRA Ireland do?
DEBRA Ireland is a national charity that supports children and adults living with EB and their families, while also funding research into better treatments and a cure.
How can families affected by EB get support?
Families can find out more about DEBRA Ireland’s services and supports directly through the charity’s own website.
Related articles
- How the Dyslexia Association of Ireland Supports Children to Reach Their Full Potential
- More stories from our Charity of the Year series
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