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: https://bit.ly/4lnQN2P

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: https://bit.ly/3Mp3HRh

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. 🦋🩵

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 ⬇️ https://bit.ly/4r33rX4

💙 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

💙 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: https://bit.ly/3O9rtRr Thank you for helping us #StopThePain of EB 🦋

🎂 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

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: https://bit.ly/49oIiQA

🎄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! 💙

🌙 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: https://bit.ly/4ikkEaP

🔬 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 👇 https://bit.ly/4p2Y0pC

🔬 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: https://bit.ly/4rKusPQ

🔬 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: https://www.debra.org.uk/q3-2025-research-update

💙 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: https://bit.ly/4f36is7

🌍 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: https://bit.ly/3XR7LLX 🩵

🦋 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

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: https://bit.ly/4nW4Igi

📍 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: https://bit.ly/47TdZQd #EBawareness #DEBRAUK

🧬 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: https://bit.ly/45SbKNi

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: https://bit.ly/4grgP1S #EBAW #EBAW2025

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: https://bit.ly/4njcikI #EBAwarenessWeek2025 #FightEB #EBResearch #DEBRAUK

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: https://bit.ly/42VRRD8

🧵 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: https://bit.ly/437XHkQ #InsideOutForEB

🔬 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 👇 https://bit.ly/4gglYdW

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: https://bit.ly/46Hzap0

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

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 👉 https://bit.ly/4m5yWfC

🛍️ 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: https://bit.ly/4mlbTOb

🦋 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: https://bit.ly/4nZn14m

🔬 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

🦷 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: https://bit.ly/46xHdEO

DEBRA member Anna Ritchie and her daughter Jasmine will be on your screen's tomorrow! 📺 Catch them on Good Morning Britain tomorrow (Thursday 2nd October) at 8:15am, Remember to tune in, and help us spread the word by sharing this post with your friends and family. 🦋

We’re thrilled to welcome Carly Fields as new Chair of Trustees! Carly brings lived experience, passion & leadership to the role, having been part of the DEBRA community since 2014 when her daughter was first diagnosed with EB. 👉 Read more about Carly’s appointment & vision: https://bit.ly/48GIn23

📢 EB Clinical Practice Guidelines - now updated! Did you know we have a dedicated page for EB Clinical Practice Guidelines (CPGs) - covering everything from wound care to psychosocial care? 🔍 Explore all professional and patient guidelines now: https://bit.ly/3K1hLhY

💙 A few of our amazing DEBRA ambassadors and members were delighted to attend The 3rd Brothers Trust and Tom Holland Posh Pub Quiz last weekend - a heartfelt evening in support of DEBRA UK and other incredible causes. Thank you so much for having us! 🦋

DEBRA UK Members, you're invited to our virtual Christmas party! Join us for a night of festive fun at our Virtual Christmas Party, hosted by the brilliant team at AVVA 🎁✨ Let’s celebrate the season together - wherever you are! 👉 Find out more and book your place today: https://bit.ly/4nE2wKp

Your online shopping could raise DOUBLE the normal donation thanks to our friends at @giveasyoulive. Every penny helps to support those living, day in day out, with epidermolysis bullosa. 🩵 It's completely free to use - just click, shop and raise: https://bit.ly/46wo98J

We’re proud to share that NoriZite™, a new mouth spray developed with funding from DEBRA UK and DEBRA Ireland, is now available to purchase. It shows promising potential to relieve oral EB symptoms - helping improve everyday comfort for EB 💙 Learn more: debra.org.uk/fighting-eb-pain-mouth-spray

🧬 Join us for our next Research & Health Webinar! 📅 Wednesday 17th September, 1pm (BST) This month, we're joined by Dr Josefine Hirschfeld and Dr Dario Balacco who will share their latest research & insights into microbiomes in EB, followed by a Q&A. https://bit.ly/45SbKNi #DEBRAUK #EBResearch

🏑 From blisters to bronze: Laverne’s hockey journey Born with EB Simplex, Laverne has faced painful blistering since childhood.. but her love for sport never faded. Her story is one of resilience, community & the life-changing support she received from DEBRA 💙 📖 Read more: https://bit.ly/4m5yWfC

🎄DEBRA Christmas cards are now available to purchase! 💌 With 15 beautiful card designs and 4 gift wrap styles, every pack you buy helps fund vital specialist healthcare, research & support for the EB community. 💙 Shop now and help us to make a difference - https://bit.ly/41JJ7zq

🔬 Research highlight: PhD - improving skin repair in JEB 🔬 Dr Rognoni's four-year project will train a new scientist specialising in EB research as they achieve their PhD by studying ways to reduce EB symptoms at a cellular level. Read more about the project! 👇 https://bit.ly/4fpoga3

🧡 It’s World Sexual Health Day! For people living with EB, navigating intimacy and relationships can be complex. That’s why we have a dedicated resource to support open, respectful conversations around sexuality & wellbeing. 💬 https://bit.ly/3JNboid #WorldSexualHealthDay #DEBRAUK #EBCommunity

Ann, Paul & Mark are at the Vizion Network Kinetic’25 Expo in Telford, chatting to visitors about supporting DEBRA & joining a club that cares about cars & community. 📍 If you're at the Expo tomorrow, pop by stand G4 to say hello! #Kinetic25 #DEBRAUK #CharityWithImpact

🗞️ Yesterday, the UK Government published its 10-Year Health Plan. At DEBRA UK, we’re focused on what this means for people living with EB. Encouraging signs: ✅ Mental health support ✅ Agreed care plans ✅ Community care 🔗 Read more: www.debra.org.uk/government-p...

A few ways you can make a difference to people living with epidermolysis bullosa (EB) this #RandomActsOfKindnessDay! 💙 Get involved 👉 bit.ly/3X3R7sO Thank you to all our wonderful supporters. With your help we can get one step closer to a world where no one has to suffer with the pain of EB.

This #InternationalDayOfWomenAndGirlsInScience, meet our researcher Dr Giovana Carrasco, a research fellow working at The University of Edinburgh 🔬 Giovana is working on a project which aims to understand the growth and spread of skin cancer in KEB. Read more about Giovana's research 👇

Thank you to the team at @charitydebra.bsky.social for hosting me last week. It was great to catch up about their vital work, and hear more about what can be done to support those living with epidermolysis bullosa

Speaker announcement! 🙌 Our ambassador Daval will be speaking at our #RareDisease 101 webinar on 25th February! Daval will be talking about his experiences of EB and what patient advocacy groups like @charitydebra.bsky.social bring to people with #rareconditions. www.m4rd.org/event/rare-d...

On Friday we welcomed our new MP for Bracknell, Peter Swallow (@peter4bracknell.bsky.social), to our head office. We'd like to thank Peter for taking the time out of his busy schedule and for the interest he has shown in epidermolysis bullosa (EB) and DEBRA. Read more 👉 bit.ly/41aMdMI