We need your help this #GivingTuesday to ensure Darcie, and other children with epidermolysis bullosa (EB), get the vital healthcare and familial support they so desperately need. "Through DEBRA’s EB Community Support Team, we met Amelia - our lifeline. She helped us access support grants for essential items like a changing table to ease the strain on our backs, sheepskin liners to protect Darcie’s delicate skin, and seam-free clothing so she could finally wear the pretty outfits she deserves, w
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We need your help this #GivingTuesday to ensure Darcie, …
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When eight-month-old baby Albi was born with severe recessive dystrophic epidermolysis bullosa (RDEB severe), it was a huge shock to his parents, Erin and Calum. "From the moment Albi entered this world, we have all been on quite the journey. When we first met him, we were in shock; his tiny little legs, red and raw, indicated that something wasn’t right." Erin, mum to Albi "With the support of specialists and DEBRA UK, we found relief and answers. DEBRA UK, through its Community Support Team, l
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When eight-month-old baby Albi was born with severe recessive dy…
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"I always have a bit of pain everywhere." Did you watch 14 year old Isla Grist on BBC Breakfast? The report showed the harsh realities of life with recessive dystrophic epidermolysis bullosa (RDEB), including speaking to Isla's carers, Jean and Linda, about Isla's dressing changes which can take up to 5 hours. In less than two weeks, Isla's dad, Andy and football legend, Graeme Souness, will be swimming the English Channel as part of a team to raise funds for DEBRA. Please sponsor Graeme's swim
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"I always have a bit of pain everywhere." Did you watch 14 ye…
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Nov 7, 2024
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"I can only describe EB as like living in a nightmare." Hiba was born into a world of unimaginable pain. From the moment her life started, she fought against the excruciating pain caused by epidermolysis bullosa (EB). In a heartfelt interview from January, Hiba opened up about her passion for writing and her ultimate wish: one day, the pain of EB will vanish. Sadly, Hiba passed away on February 11th 2023, at the tender age of 14. But her dream lives on, and we have the power to make it a reality
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"I can only describe EB as like living in a nightmare." Hiba was born int…
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On November 7, 2025, we were honored to host Light the Night for Darcie, a special gala raising awareness for Epidermolysis Bullosa (EB) and supporting DEBRA UK. We're overwhelmed with gratitude to our incredible supporters who helped make the evening unforgettable! Huge thanks to: - Kay-Nine for sponsoring our VIP tickets and showing your kindness - Balloon perfection for creating a stunning balloon arch that made our photobooth pop! - Shelby's Cakes and Bakes for the delicious butterfly cookie
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On November 7, 2025, we were honored to host Light the Night fo…
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"A diagnosis has empowered me because it's a thing I can then say: I have this condition and that means I can't do the things that you can do. When you say to people I have these blisters, I have these sore feet, it doesn't sound like anything, does it? A diagnosis has meant I feel like I have permission to treat myself better because I can say, I can't do that because of my EB. You might not be able to see it, but it's something that is a real struggle." Through DEBRA UK, Sarah has connected wi
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"A diagnosis has empowered me because it's a thing I can then say…
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"If you witness it, it's beyond belief, it really is. You would think this w…
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Pick it, pack it, post it! ♻️ Did you know you can donate to DEBRA b…
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Join Isha and take part in our #EBPriorities survey! "For me thi…
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Mental health support for people with EB can't wait. Will you help e…
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β€œLiving with EBS affects you mentally because when you can’t t…
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Darcie was born just days before Christmas with one of the most se…
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β€œEB doesn’t stop for Christmas. Your support has already brought …
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A hassle-free way to make a difference. Donate your quality pr…
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Our Community Support team are here to help EB families througho…
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We are coming to the end of #FreeWillsMonth across the UK, b…
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"The idea of repurposing drugs would just be life changing for us. …
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Thank you to everyone who joined us in raising awareness of EB thi…
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A huge thank you to everyone who joined us for DEBRA UK Members…
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β€œI can sit in my bed and sulk about it or I can change the whole perspec…
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"It's the cruellest, nastiest, disease…this is a very special you…
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"Until we can find a cure and prevent this disease, we mustn't s…
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And they’re off! πŸŠβ€β™‚οΈ Go #TeamDEBRA! We’re all routing fo…
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Graeme and the team made it through the night to France and ar…
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πŸŽ„ With Christmas only two sleeps away, we’re asking you to make o…
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"The thing about EB is it is a battle, but it is a battle we are all fighting …
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And so it begins! 🏊 #TeamDEBRA have left Dover Harbour and are of…
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Thank you to BBC Radio 5 Live for having Graeme Souness CBE and …
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Just a few of our favourite memories from the last 12 months πŸ’™ As 2024 …
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