🌍 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

This #WorldCancerDay, we’re highlighting the vital research projects we fund to understand more about the progression of cancer in EB, and to investigate opportunities for future drug development to treat skin cancer. Read more 👇

"My first memory of my EB was when I was around 3 years old. I remember attending a wart clinic to get what they thought at that the time were warts on my hands and fingers removed." Read our member Lisa's blog to hear more about her life with dominant dystrophic EB (DDEB) 👇

On behalf of everyone at DEBRA, we'd like to wish our Royal Patron, HRH The Duchess of Edinburgh a very happy 60th birthday! 🎉 We're so grateful for the Duchess' ongoing support for DEBRA and our mission to #StopThePain for people living with EB. Read more: bit.ly/4apbllY

Did you watch our DEBRA ambassador, Isla Grist, on BBC Breakfast this morning? The piece showed Emma and David Webber visiting Isla at her home in the Scottish Highlands to see her new wheelchair, part-funded by The Barnaby Webber Foundation and DEBRA. Watch the video below!

EB simplex (EBS) is the most common form of EB. Approximately 70% of the EB community live with EBS. EBS is often invisible to others, meaning those affected often need to explain it repeatedly, even to healthcare professionals. Read more about EB simplex: bit.ly/3C9c6mu

👩‍🔬 Meet the faces behind EB research! 💡 Ever wondered what goes on behind the scenes in EB research? Our research blog gives you a chance to meet the amazing researchers who work tirelessly to improve the quality of life for people living with EB. 👉 Read their stories here: bit.ly/3VOtUKr

"On a school day, I had to wake up, burst blisters, do dressings, go to school, and come home. I always took my wheelchair with me in case my feet turned bad to the point where I couldn’t walk." Read our member Daval's blog to hear more about his journey through education with EB 👉 bit.ly/3ZSXG3c

What is EB? EB is a group of rare and incredibly painful genetic skin conditions that cause the skin to blister and tear at the slightest touch. With skin as fragile as a butterfly’s wings, EB is often referred to as ‘butterfly skin’. 🦋 Find out more: bit.ly/3OIwqxN

Whatever the social media platform, we're here for people living with the rare, extremely painful, genetic skin blistering condition, epidermolysis bullosa (EB) also known as ‘butterfly skin’. Leave a butterfly emoji below to say hello! 👇🦋