DEBRA UK

02/11/2026

🏡 End-of-Season Savings: £100 Off DEBRA Holiday Home Stays

We're making it even easier for DEBRA members to enjoy a well-deserved break before our holiday parks close for the season.

Save £100 on all new holiday home bookings for the remainder of the season:

Now £200 (usually £300) 📍 Brynteg, Norfolk & Weymouth White
Now £260 (usually £360) 📍 Devon, Windermere, Weymouth Red & Newquay

There's still time to enjoy a relaxing getaway during some of the most peaceful months of the year.

• Take in beautiful lakeside views at Windermere, with the lake just moments from the holiday home.
• Enjoy the tranquillity of Kelling Heath as nature settles after the busy summer season.
• Wrap up warm and explore Devon's stunning private beach on a refreshing coastal walk.

📅 Available for stays until each park closes for the season.

To book or check availability, visit the DEBRA Holiday Homes website or contact the team:

💙 Offer applies to new bookings only.

01/11/2026

🧬 Want to learn more about the latest research into EBS?

Join us on Wednesday 4 November at 1pm for our next Research & Health Webinar with Dr Katrin Rietscher, from Leipzig University Medical Center, Germany.

Dr Rietscher will explain how researchers are studying the changes that happen in skin cells in EBS and how this research is helping to identify potential treatments.

During the webinar, you'll hear about:

🔹The role of keratin proteins in keeping skin strong and resilient
🔹How EBS is studied in the laboratory
🔹How researchers screen existing medicines to identify potential treatments
🔹The next steps in testing promising therapies

There will also be an opportunity to ask your questions during the live session.

Can't join us on the day? Previous Research & Health Webinars are available to watch on demand via our website 👉 https://bit.ly/3Z08c6P

31/10/2026

As EB Awareness Week comes to a close, DEBRA member and ambassador Fazeel has a special message for everyone who has supported the EB community this week. 💙

This week has shown the power of raising awareness together. From launching our new podcast, EB Conversations: Member Voices, to amplifying the voices of people living with EB and calling for greater support, every action has helped shine a light on a condition that too many people have never heard of.

But while is ending, life with EB continues every day.

That's why awareness matters. Every conversation, every share, and every action helps build understanding, drive change, support research, and bring us closer to a world where no one suffers from EB.

💙 Thank you for standing with the EB community!

31/10/2026

🌏 In less than a year, will be taking on the Great Wall of China!

In October 2027, a team of incredible supporters will embark on a once-in-a-lifetime adventure across one of the New Wonders of the World, tackling over 10,000 steps, ancient watchtowers and breath-taking mountain scenery along the way.

By taking on this challenge, you'll help DEBRA support people living with EB and fund research into future treatments.

Whether you're looking for your next big challenge, a bucket-list adventure, or a chance to make a real difference, this could be the opportunity you've been waiting for.

📅 9-17 October 2027
🦋 DEBRA-exclusive challenge
🌏 One of the New Wonders of the World

Who's ready to take their place on the Wall for DEBRA?

Find out more and sign up today: https://bit.ly/4s1IaMX

30/10/2026

🎙️ A new episode of EB Conversations: Member Voices is now available!

In episode two, community members Mick, DEBRA Trustee, and Jack, who lives with EB and has children living with the condition, share their experiences of EB, family life, and the importance of connecting with others who understand. 💙

Together, they reflect on the challenges and realities of life with EB, as well as the support, friendship and sense of belonging that can be found through the EB community, whether at events or through the DEBRA Men's Group.

Listen now on Spotify or watch on YouTube:

🎧 https://bit.ly/3W8nWXT
▶️ https://bit.ly/4yNcdLJ

We'd love to hear what you think in the comments if you give it a listen!

EB Conversations: Member Voices · Episode

30/10/2026

A wonderful way to close EB Awareness Week 2026 💙

Tonight, St Andrew's House and Victoria Quay in Edinburgh will be illuminated in support of people living with epidermolysis bullosa (EB).

We're incredibly thankful to the The Scottish Government for helping raise awareness of EB and showing solidarity with our community.

This display is also a reminder of the importance of advocacy and parliamentary engagement. By sharing experiences, campaigning for change and working with elected representatives, we can ensure the voices of people living with EB continue to be heard.

If you're in Edinburgh this evening, we'd love to see your photos. Share them in the comments below 👇

Thank you to everyone who has supported EB Awareness Week and helped us shine a light on EB.

29/10/2026

More than 800 people from across the global EB community came together to help identify the most urgent unanswered questions in epidermolysis bullosa (EB) research.

But the impact of DEBRA UK's Priority Setting Partnership went far beyond research priorities. Participants shared how they felt heard, valued and connected, with one family telling us: "We felt seen, heard and that our issues matter."

Find out more about the impact of the Priority Setting Partnership and the top research priorities identified by the EB community: 🔗 https://bit.ly/4yLlq88

The project not only shaped the future of EB research, it empowered the people at the heart of it, our members 🦋

28/10/2026

🔬 Could a more personalised approach to treatment help improve outcomes for people living with EB?

DEBRA UK-funded PhD Clinical Research Fellow Dr Jashmitha Rammanohar, based at King's College London and St John's Institute of Dermatology, is researching how differences in people's immune systems may influence how they respond to EB treatments.

Working as part of the ART-EB clinical trial led by Dr Su Lwin, Jash's research aims to build a clearer picture of the immune systems of people living with EB before and during treatment. The hope is that, in the future, this could help researchers identify which treatments are most likely to work for different individuals.

By exploring opportunities to repurpose existing immune-targeting medicines, this research could help accelerate access to effective treatments and improve quality of life for people living with EB.

Read more about Jash's research and the ART-EB programme here 👉 https://bit.ly/4B81DBA

28/10/2026

💙 On Monday night, during EB Awareness Week, we were proud to bring together members of the EB community, researchers, healthcare professionals, supporters and policymakers at the UK House of Lords to raise awareness of epidermolysis bullosa (EB) and the urgent need for effective treatments.

One of the most moving moments of the evening came from DEBRA member and ambassador Lucy Beall, who shared:

"And for the first time in my entire life, I am seeing the possibilities of a future where there is less pain for us, less fear, less anguish."

We'd like to thank Lord Forsyth of Drumlean, Professor Jemima Mellerio, Lucy Beall, Dr Su Lwin, Graeme Souness CBE and Claude Brown for helping make the event such a success.

It was inspiring to see so many passionate people in one room, united by a shared determination to improve the lives of those affected by EB.

While gives us an important opportunity to shine a spotlight on EB, this work doesn't stop when the week ends.

Every day, researchers, clinicians, campaigners, supporters and people living with EB are working together to bring us closer to a future with effective treatments and less pain.

🦋 To everyone helping make that future possible, thank you for being on this journey with us.

27/10/2026

We’re heading to the 2026 RCGP Annual Conference and Exhibition this week! 👋

Join us at the SEC Glasgow on Thursday 29 and Friday 30 October to discover our new epidermolysis bullosa (EB) CPD module. It’s designed to help GPs recognise key symptoms, support effective diagnosis, and understand the referral pathway to specialist NHS EB care.

Attending the conference? Please come and say hello at stand D34!

Bob Doris MSP DEBRA Community Fundraising Scotland Royal College of General Practitioners