@charitydebra
DEBRA is a UK national medical research charity and patient support organisation for people living with the rare, extremely painful, genetic skin blistering condition, epidermolysis bullosa (EB). Find out more: https://bit.ly/4jaRfQG
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
