🎂 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

DEBRA UK - The butterfly skin charity We are a national charity and patient support organisation for people living with Epidermolysis Bullosa (EB).

🦋 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

📍 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

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

Research and Health webinars Our Research and Health webinar series feature a variety guests speaking live about their expertise in EB research and healthcare.

🧬 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

EB and sexuality Understanding Sexual Health for people with EB and where to access psychological support for sexual expression for people with EB.

🧡 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

🌍 At the 78th World Health Assembly, skin disease was officially… | DEBRA UK 🌍 At the 78th World Health Assembly, skin disease was officially recognised as a global public health priority — a major step forward! 🙌 With 2+ billion people affected worldwide, this resolution by ...

Finally some good news! #debraUK #debra #butterflychildren #ebawareness #health #medical #children #fragileskin #butterflyskin

www.linkedin.com/posts/debra-...

sweet Dasha girl playing with the eggs. a month ago we were just getting her discharged from the hospital for the flu and weight loss. in the last month she's back to crawling, gaining weight and play... TikTok video by TheButterflyBabies🦋🦋(Soph)

These are the babies I’m raising awareness for. These are their families that live with the unknown of whether or not they get the help they need. Give these babies a voice and a chance. #butterflychildren #family #epidermolyisisbullosa #funding #debrauk #debra
www.tiktok.com/t/ZTjMV62HP/

Ki Empress (@kg.artist0991) is LIVE - TikTok LIVE Building Rooms-Inzoi | Watch Ki Empress (@kg.artist0991)'s LIVE on TikTok and interact with others in real time.

www.tiktok.com/@kg.artist09...
Another day another stream, help me raise awarenes for EB and help me get my grandparents to see Andrea Bocelli (raising 1500 USD) Ticket sites do the most smdh.
#andreabocelli #butterflychildren #tickets #debra #debrauk #Inzoi #inzoistream #livestream #tiktoklive

Bath day. Life with EB is very complex and challenging. No day is ever the same. We have good and bad days. We just have to go with the flow and deal with things as they come. Today has been positive... TikTok video by Darcie🦋

One of the examples of a baby living with EB. This is what I’m raising awareness for and I’m not gaining a thing I WANT to do this. These are people’s babies. I want if not them another child to have a chance. #EB #butterflychildren #debrauk #debraUS #awareness #charity

www.tiktok.com/t/ZTjjj1YMn/