iiinova — where your digital self keeps evolving

DEBRA UK @charitydebra.bsky.social · 18/09/2026

"There is light at the end of the tunnel." 🩵 This morning, Graeme and Isla spoke on BBC Breakfast about why awareness and research funding for EB matter so much. Watch the full interview now: bit.ly/4hzwYVW #DEBRAUK #StopThePain #EBAwareness

youtube.com

Graeme Souness completes new challenge | Isla shares the reality of butterfly skin | BBC Breakfast

YouTube video by DEBRA UK

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DEBRA UK @charitydebra.bsky.social · 17/09/2026

💙 The challenge is in its final strides. Graeme and team have given everything over the last 3 days. Help us cross the finish line and reach our £500,000 target to fund potentially life-changing people trials living with EB: bit.ly/4qEvVah #DEBRAUK #GraemesChallenge2026 #StopThePain

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DEBRA UK @charitydebra.bsky.social · 03/09/2026

A quick update... Graeme's big announcement has moved, but not for long! 📺 Tune in to BBC Breakfast this Saturday morning (5 September) when DEBRA UK President Graeme Souness CBE reveals his latest fundraising challenge for people living with EB.💙 #DEBRAUK #BBCBreakfast #FundraisingChallenge

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DEBRA UK @charitydebra.bsky.social · 18/08/2026

💙 The Summer 2026 edition of Impact is here! Read Jennifer & William's story, research updates, Members' Weekend highlights, and more. 📖 bit.ly/4bWEYx5 Thank you for helping us #StopThePain of EB 🦋 #EB #RareDisease #DEBRAUK

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DEBRA UK @charitydebra.bsky.social · 15/08/2026

Something's coming.... One month to go; the countdown begins. 15.09.2026 🦋 #DEBRAUK #StopThePain #DEBRAChallenge2026

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DEBRA UK @charitydebra.bsky.social · 31/07/2026

This week, DEBRA UK President Graeme Souness and our CEO met with First Minister John Swinney to raise awareness of epidermolysis bullosa (EB) and the need for better care and support across Scotland. Find out more: bit.ly/4wqI1ps #EB #DEBRAUK #StopThePain

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DEBRA UK @charitydebra.bsky.social · 08/07/2026

Our new Global EB Taskforce outcomes report is now live. A 10-year roadmap focused on better treatments, stronger care, and real impact for people living with EB - driven by global collaboration. Read more 👉 bit.ly/4vCXamB #DEBRAUK #EBAwareness

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DEBRA publishes new Global EB Taskforce outcomes report

The new Global EB Taskforce outcomes report sets out a clear 10-year roadmap to accelerate progress for people living with EB.

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DEBRA UK @charitydebra.bsky.social · 30/06/2026

Today, former Chair, Jim Irvine MBE, attended his investiture at Holyrood Palace. This award recognises Jim’s incredible 25 years of service to people living with epidermolysis bullosa (EB). We’re hugely grateful for everything Jim has done for the community. 💙 #DEBRAUK #EBAwareness #StopThePain

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DEBRA UK @charitydebra.bsky.social · 13/06/2026

DEBRA UK and @greatormondst.bsky.social have launched a new funding opportunity to support research into childhood EB. Grants up to £350k available for UK researchers. 📅 Deadline: 16th July 2026 🔗 Find out more: bit.ly/43t0PHR #EBAwareness #DEBRAUK #StopThePain #RareDisease

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DEBRA UK @charitydebra.bsky.social · 10/06/2026

We’re delighted to appoint former Chair Jim Irvine as DEBRA’s Honorary Life Patron 💙 Thank you, Jim, for more than 25 years of dedication to the EB community and ongoing support as a lifelong ambassador. 🔗 Read more: bit.ly/4aB0jLG #DEBRAUK #StopThePain #EBAwareness

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DEBRA UK @charitydebra.bsky.social · 08/06/2026

At DEBRA, everything starts with our members 💙 We have now launched our 2027–2029 strategic plan - shaped by member insight, research, and community priorities. See what’s ahead: www.debra.org.uk/debras-new-2027-20… #DEBRAUK #StopThePain #EBAwareness

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DEBRA UK @charitydebra.bsky.social · 08/06/2026

🔬 We’re proud to be one of 89 charities awarded a share of @nihr.bsky.social's £37m investment, supporting 800+ early-career researchers. 🩵 Find out more: bit.ly/4aft801 #DEBRAUK #EBResearch #EBAwareness #StopThePain

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DEBRA UK @charitydebra.bsky.social · 04/06/2026

Our new survey results highlight serious issues with EB prescription access - including missing or substituted items, which can increase pain & risk of infection. Read more: bit.ly/4omF1rb We’re calling for clearer guidance & better support to protect patient care 💙 #DEBRAUK #EBAwareness

debra.org.uk

EB patients being failed by prescription changes

A new patient survey has revealed multiple challenges concerning prescription fulfilment for EB patients.

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DEBRA UK @charitydebra.bsky.social · 18/05/2026

Encouraging news for the DEB community 💙 Vyjuvek®, a topical gene therapy for dystrophic epidermolysis bullosa, has been approved by the MHRA - bringing it closer to UK patients. The next step is a NICE decision on NHS use, with DEBRA proudly representing patient voices: bit.ly/3RsdVCj

bit.ly

Vyjuvek: Breakthrough DEB treatment edges closer to NHS use

A new drug treatment for dystrophic epidermolysis bullosa (DEB) is one step closer to being made available to patients in the UK.

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DEBRA UK @charitydebra.bsky.social · 06/05/2026

Jasmine is 13 and lives with EB - a condition so painful even the lightest touch can tear her skin. For the first time, there’s real hope. 💙 Help us fund vital EB research this Spring, so we can change the lives of those like Jasmine: bit.ly/4d8qoU6 #DEBRAUK #StopThePain

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DEBRA UK @charitydebra.bsky.social · 22/04/2026

🔬 New research to protect sight in people living with JEB We’re delighted to be funding a 4‑year research study focused on protecting against sight loss in patients with JEB, in partnership with @fightforsight.bsky.social Read more: bit.ly/49107Vc #DEBRAUK #EBResearch #EBAwareness #JEB

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DEBRA UK @charitydebra.bsky.social · 21/04/2026

📢 We’re delighted to announce Graeme Souness CBE as our new President from 1st May 2026. Graeme succeeds Simon Weston CBE, who will continue supporting the EB community as an Honorary Life Patron. Graeme’s mission: to help stop the pain of EB. Read more: bit.ly/3Qk92Li

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DEBRA UK @charitydebra.bsky.social · 16/04/2026

Since our research programme began, we have invested an average of £500,000 a year in pioneering EB research - £24 million so far. This sustained commitment is accelerating treatment breakthroughs, improving quality of life & bringing us closer to a world where EB no longer limits lives. 🦋

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DEBRA UK @charitydebra.bsky.social · 06/03/2026

Yesterday (Thursday 5th March) HRH The Duchess of Edinburgh GCVO, attended our inaugural EB Global Taskforce at historic Hever Castle. A huge thank you to all who contributed their expertise, imagination, and determination. 🦋 Read more about the Taskforce on our website: bit.ly/4lnQN2P

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DEBRA UK @charitydebra.bsky.social · 28/02/2026

Happy #RareDiseaseDay 💙💚💜 We’re proud to stand with the rare disease community every day - but especially today - as we shine a light on epidermolysis bullosa (EB) and all rare conditions. Together, we can make a change! Find out how you can get involved on our website: bit.ly/3Mp3HRh

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DEBRA UK @charitydebra.bsky.social · 28/02/2026

Happy #RareDiseaseDay 💙💚💜 We’re proud to stand with the rare disease community every day - but especially today as we shine a light on epidermolysis bullosa (EB) and all rare conditions. Together, we’re working toward faster diagnoses, better treatments & a future where no one feels alone. 🦋🩵

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DEBRA UK @charitydebra.bsky.social · 09/02/2026

With advances in drug repurposing, gene therapy & growing regulatory support, momentum is building, and so is hope for those living with EB. 🦋 Sagair Hussain shares with The Pharmaceutical Journal early results from treatments already improving quality of life. Read more ⬇️ bit.ly/4r33rX4

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Is a cure for epidermolysis bullosa on the horizon?

“I grew up just thinking blisters were a part of everyday life,” says Jessica Skeith. “My parents would always get me the expensive school shoes hoping that they wouldn't give me blisters, but I always got them no matter what.” Skeith, aged 29 years, h...

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DEBRA UK @charitydebra.bsky.social · 31/01/2026

💙 Exciting news! Team DEBRA Scotland is gearing up for the London Landmarks Half Marathon @londonlandmarkshalf on Sunday 12th April! 🏃‍♀️✨ We’re super excited that our ambassadors Emma Dodds and Scott Brown will be joining #TeamDEBRA! Please join us in cheering them on! #TeamDEBRA #LLHM #StopThePain

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DEBRA UK @charitydebra.bsky.social · 29/01/2026

💙 The new edition of Impact is here! Discover the families you’re helping and the difference your support makes for people living with EB. ➡️ Read now: bit.ly/3O9rtRr Thank you for helping us #StopThePain of EB 🦋

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DEBRA UK @charitydebra.bsky.social · 20/01/2026

🎂 We are wishing our Royal Patron, HRH The Duchess of Edinburgh, a very happy birthday! 💜 We are incredibly grateful for Her Royal Highness’s unwavering support for the EB community and DEBRA’s mission to stop the pain of EB. 💙 #DEBRAUK #EBAwareness

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DEBRA UK @charitydebra.bsky.social · 30/12/2025

We’re thrilled to share the incredible news - former Chair of Trustees, Jim Irvine, has been recommended to His Majesty The King for an MBE in the New Year 2026 Honours List for his outstanding services to people living with EB over the past 25 years. 💜 Read more: bit.ly/49oIiQA

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DEBRA UK @charitydebra.bsky.social · 25/12/2025

🎄Merry Christmas from everyone at DEBRA UK! Thank you for being part of our journey and supporting our work to #FightEB. Wishing you a joyful holiday season and a wonderful New Year! 💙

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DEBRA UK @charitydebra.bsky.social · 21/12/2025

🌙 Tonight marks the longest night of the year. For families like Darcie's, every night can feel long, painful, and exhausting. This winter solstice, we’re asking you to join us in making a difference and shine a light on EB. 💙 Donate today: bit.ly/4ikkEaP

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DEBRA UK @charitydebra.bsky.social · 14/12/2025

🔬 Research blog: How EB affects brothers and sisters🔬 Dr. Dr Sarah Downey has completed her Doctorate in Clinical Psychology at Cardiff University with help from DEBRA members who took part in her research study. Read more on Sarah's blog 👇 bit.ly/4p2Y0pC

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DEBRA UK @charitydebra.bsky.social · 08/12/2025

🔬 The protocol for a clinical trial that we're currently funding has been published in a scientific journal & lays out how this trial will study whether apremilast, a drug approved for psoriasis, could help people living with severe EBS. 🔗Read more: bit.ly/4rKusPQ

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DEBRA UK @charitydebra.bsky.social · 07/12/2025

🔬 Our Autumn Research Update is live! Discover the latest breakthroughs and progress in EB research, including new treatment developments and ongoing clinical trials. 👉 Read the full summary here: www.debra.org.uk/q3-2025-research-u…

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DEBRA UK @charitydebra.bsky.social · 05/12/2025

💙 Happy #InternationalVolunteerDay! 💙 Our 1,000+ volunteers are incredible - every single one makes a real difference to people living with EB every day. Want to help make a difference? Visit our website for more information: bit.ly/4f36is7

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DEBRA UK @charitydebra.bsky.social · 03/12/2025

🌍 Today is International Day of Persons with Disabilities. Not all disabilities are visible. For those living with EB, the challenges go beyond the skin - pain, fatigue, and emotional struggles are often hidden. Learn more on our website: bit.ly/3XR7LLX 🩵

debra.org.uk

Hidden disabilities: Guidance for EB patients

Hidden Disabilities: Find out how you can make other people more aware of your EB and get the support you need.

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DEBRA UK @charitydebra.bsky.social · 25/11/2025

🦋 DEBRA UK supports people living with epidermolysis bullosa (EB), a rare and painful skin condition. We provide care, fund research for treatments & cures, and work with the NHS to deliver specialist support. Learn more: debra.org.uk #EB #RareDisease #DEBRAUK

debra.org.uk

DEBRA UK - The butterfly skin charity

We are a national charity and patient support organisation for people living with Epidermolysis Bullosa (EB).

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DEBRA UK @charitydebra.bsky.social · 13/11/2025

Our Q3 Update is live! July to September has been an incredible quarter for DEBRA, filled with progress, community support, and steps forward in our mission to improve life for people living with EB. 🦋 Read the full update and see how together we’re making a difference: bit.ly/4nW4Igi

debra.org.uk

DEBRA Quarterly Update 2025 Q3

Stay informed with the DEBRA Quarterly Update 2025 Q3, featuring the latest insights and developments you need to know.

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DEBRA UK @charitydebra.bsky.social · 13/11/2025

📍 Last night, we were proud to host a special reception at Scottish Parliament to share the latest global EB research priorities and highlight the urgent need for improved access to specialist EB healthcare in Scotland. 📖 Read the full story: bit.ly/47TdZQd #EBawareness #DEBRAUK

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DEBRA UK @charitydebra.bsky.social · 02/11/2025

🧬 Join us for our next Research & Health Webinar on Wednesday 5th November, 8pm Dr. Cory Simpson will talk about creating human tissue models of epidermolysis bullosa simplex to discover new therapeutic strategies. 👉 Register or catch up here: bit.ly/45SbKNi

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DEBRA UK @charitydebra.bsky.social · 31/10/2025

This #EBAwarenessWeek, we want to say a huge thank you for your support to help us #FightEB and work towards our vision of a world where no one suffers with EB. 🦋 Reshare this post & find out how you can get involved and support the EB community here: bit.ly/4grgP1S #EBAW #EBAW2025

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DEBRA UK @charitydebra.bsky.social · 29/10/2025

In 40 years, DEBRA UK has invested £22m in pioneering research 🧬 We have undertaken 164 projects, worked with 127 researchers in 63 research sites across 16 countries. Read more in our latest research round-up: bit.ly/4njcikI #EBAwarenessWeek2025 #FightEB #EBResearch #DEBRAUK

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DEBRA UK @charitydebra.bsky.social · 27/10/2025

DEBRA UK and @lifearc.bsky.social have provisionally agreed to fund ART-EB - a multi-million-pound, 5-year drug repurposing trial, and the largest single investment in global EB research to date. 🧬 Learn more about the project & what it means for the EB community: bit.ly/42VRRD8

debra.org.uk

LifeArc and DEBRA UK to partner in multi-million drug repurposing trial

This project, known as the ART (Advancing Repurposed Therapeutics) EB trial, will be the single largest investment yet in global EB research.

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DEBRA UK @charitydebra.bsky.social · 16/10/2025

🧵 Flip your clothes Inside Out for EB! Even seams can cause pain for those with EB - wearing clothes inside out helps protect fragile skin. 👚 Join us, DEBRA International & DEBRA Ireland for #EBAwarenessWeek2025 📅 Wear on any day that works 💻 Fundraise: bit.ly/437XHkQ #InsideOutForEB

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DEBRA UK @charitydebra.bsky.social · 12/10/2025

🔬 Research blog: Could a psoriasis drug ease symptoms of EBS?🔬 With support from DEBRA UK, Christine's team is working to repurpose apremilast (an approved psoriasis drug) bringing hope for a faster, accessible treatment for those living with EBS. Read more now 👇 bit.ly/4gglYdW

debra.org.uk

Clinical trial to repurpose an approved psoriasis drug for EBS

Dr Rob Hynds shares her research

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DEBRA UK @charitydebra.bsky.social · 10/10/2025

Today is #WorldMentalHealthDay2025 🩵 A reminder that mental wellbeing matters just as much as physical health - especially for those living with or caring for someone with EB. 🦋 You’re never alone in this journey. Find out how we can support you: bit.ly/46Hzap0

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DEBRA UK @charitydebra.bsky.social · 09/10/2025

In 2024, you raised just over £92,500 through gift-aided donations! ✅ Gift aid increases the value of your donation by 25%, at no extra cost to you. If you’re a UK tax player, please #TickTheBox this #GiftAidAwarenessDay & complete our gift aid sign-up form if you haven’t already: bit.ly/3XOxlkr

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DEBRA UK @charitydebra.bsky.social · 09/10/2025

This #WorldSightDay, we're highlighting an incredible research project seeking to transfer an eye-drop technology that was developed almost ten years ago to benefit EB patients. 🔬 Read more on Prof Grover's blog now 👉 bit.ly/4m5yWfC

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DEBRA UK @charitydebra.bsky.social · 08/10/2025

🛍️ Did you know you can support DEBRA UK every time you shop online - at no extra cost to you? Every donation helps us continue providing vital support to the EB community. 💙 It only takes a minute to get started - and makes a lasting impact. Sign up today: bit.ly/4mlbTOb

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DEBRA UK @charitydebra.bsky.social · 07/10/2025

🦋 Unlock the full power of your DEBRA membership in this exclusive webinar Whether you're new to DEBRA or a long-time member, this is your chance to ask questions, explore resources & make the most of your membership. 📅 Wednesday 29th October, 12:30pm: bit.ly/4nZn14m

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DEBRA UK @charitydebra.bsky.social · 05/10/2025

🔬 Research highlight: Screening drugs to target RDEB cancer 🔬 Over 3,000 approved drugs will be screened to identify which kill skin cancer cells & could be repurposed to treat the aggressive form of skin cancer which frequently affects people with RDEB. Read more now! 👇https://bit.ly/4nmzw9R

debra.org.uk

Screening drugs to target RDEB cancer

Identifying effective treatments for skin cancer in patients with RDEB. Learn about the promising findings that could lead to rapid clinical trials for safer, repurposed therapies.

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DEBRA UK @charitydebra.bsky.social · 03/10/2025

🦷 Gentle hands for fragile smiles Dental care can be especially challenging for children living with EB. This blog, penned by GOSH nurse Jennifer, explores the importance of compassionate, informed care & how small changes can make a big difference. 👉 Read the full story: bit.ly/46xHdEO

debra.org.uk

Gentle hands for fragile smiles: dental care for children with EB

Discover how specialist dental nurse Jennifer Wood provides compassionate, tailored dental care for children with epidermolysis bullosa (EB).

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