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Total raised so far

£48,309.00 +£156.25 Gift Aid See breakdown

Recent donations

11 months ago

Paul Mason


Hope money helps make life easier with research

12 months ago

John Akhurst


+ £7.50 Gift Aid

12 months ago



12 months ago

Ron &Jayne


+ £6.25 Gift Aid

12 months ago



+ £5.00 Gift Aid

12 months ago

Robert Janes


12 months ago



God bless all those suffering

12 months ago

Geoffrey TIMMS


+ £12.50 Gift Aid

Best of luck for the swim and finding a cure.

12 months ago

David Clark


+ £2.50 Gift Aid

12 months ago

Darren Fell


+ £25.00 Gift Aid

Graeme what you are doing is amazing to raise awareness for this horrible disease and Illa (not sure I’ve spelt this correctly), you are incredible and your daily fight is beyond inspirational! For everyone that has this.

Give the Gift of Hope

DEBRA UK is raising money for DEBRA

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My story

This year my family has been fighting two wars – one in our homeland and one against Epidermolysis Bullosa (EB).

Both were wars we did not ask for, ones we never wanted to fight in.

We have been fighting EB since my daughter Sasha was born two years ago. She has Junctional EB and her skin is as fragile as a butterfly’s wing. The slightest touch or friction can cause her skin to blister, leaving incredibly painful open wounds.

When war broke out in Ukraine, we fled the country with my father, my partner and son, Roman. We left our home, our country, our lives.
Before this nightmare began, I connected with fellow EB parents on social media. This was where I would meet Karen, who helped transform our lives. Tragically, Karen lost her son Dylan to JEB when he was just three months and one day old – this is the same severe form of EB that Sasha has. Dylan is sadly no longer with us, but his light helped guide us to safety.

Karen introduced us to our DEBRA Community Support Manager, Rowena. She is one of the greatest gifts my family has ever received.
Rowena has helped us in endless ways. She does more than help solve practical problems, she provides emotional support and comfort. I have always felt that it is impossible to survive with EB without support and comfort – it is like oxygen.

Give hope the power to give EB families like mine the gift of hope this Christmas. Hope for future treatments, hope for a brighter future and hope for a life free of pain.

Every donation will be match funded up to a total of £30,000 – making twice the impact.

Thank you.

Thank you for checking out my page. Making a donation is fast, easy and secure thanks to Give as you Live Donate. They'll take your donation and pass it onto DEBRA.

DEBRA UK is fundraising for


Charity number: 1084958

DEBRA UK is fundraising as part of

A Life Free of Pain

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