Debra Crewe

08/10/2026

Do something unforgettable this October 🔥

Join on Thursday 29 October 2026 at The Grange Derby, a beautiful Georgian manor house set within secluded woodland, for DEBRA's Firewalk Challenge and take on an experience you'll never forget, all whilst raising vital funds for people living with EB.

You'll receive full training and support before taking your walk across the embers, followed by celebrations, certificates and a buffet.

Every step you take will help DEBRA UK provide care and support for people living with epidermolysis bullosa (EB) and fund research into future treatments.

The £100 fundraising target could help fund overnight accommodation for EB parents and carers travelling to specialist healthcare appointments, easing some of the financial burden during what can already be a challenging time. 💙

Book your place today: https://bit.ly/4vYEOfR

08/10/2026

Meet the Team: National 3 Peaks Challenge ⛰️

Following the incredible efforts of Graeme Souness and his team on the National 3 Peaks Challenge, this weekend 30 more incredible supporters will be taking on the same challenge with Charity Challenge for DEBRA UK, climbing the highest mountains in Scotland, England and Wales to raise vital funds and awareness for people living with epidermolysis bullosa (EB).

💙 Lizzie, who lives with EBS, signed up for the challenge just 25 days ago after completing the London Marathon. For her, this weekend is about more than reaching the summits. It's a chance to raise awareness of EB and support others living with the condition every day.

💙 Adam may be familiar to many of you from DEBRA UK's Kilimanjaro trek last year. Inspired by that experience, he's back for another challenge to raise funds and awareness for the EB community. While he's expecting the National 3 Peaks to test him in new ways, he's proud to be continuing his support for a cause close to his heart.

💙 Rachel was inspired to take part alongside colleagues from the NBRA. She's looking forward to pushing herself, raising vital funds and helping shine a light on DEBRA UK's work supporting people living with EB. Despite feeling a few nerves, she's ready to take on the adventure.

To Lizzie, Adam, Rachel and every member of UK, thank you for taking on this incredible challenge. 👏

Please join us in wishing all 30 participants the very best of luck in the comments below!

Feeling inspired? Whether it's a trek, a run, a skydive or something completely unique, there's a fundraising challenge for everyone. Take on your own adventure for DEBRA UK and help raise vital funds and awareness for people living with EB.

👉 Find your next challenge: https://bit.ly/3VVntW2

07/10/2026

Have you or a family member received genetic test results? 🧬

Your experience could help improve how genetic test results are shared with patients and families.

The NHS South East Genomic Medicine Service is looking for people with lived experience to complete a short survey and share their thoughts on how genomic reports and test results are communicated. By sharing your feedback, you could help make this experience clearer, more accessible, and more supportive for others in the future.

If you'd like to take part, please complete the survey before 30th October Patient Survey: https://bit.ly/4ra5rxH

🦋 Every experience has the power to create change. Join our Involvement Network to hear about more opportunities like this and other ways you can use your lived experience: https://bit.ly/3Ix9thq

06/10/2026

This Free Wills Month, we're reminding supporters that with DEBRA UK, you can write your Will for FREE all year round. 💙

A Will is one of the most important gifts you can leave for the people you love. That's why we're proud to offer free Will writing services to all DEBRA UK supporters and members aged 18 and over.

Choose to:

📱Write your Will online
📞 Complete it over the phone
🤝 Meet with a local solicitor

There is no obligation to leave a gift to DEBRA in your Will, but every gift left helps us fund vital research into treatments that could transform life for people living with EB.

Learn more today: https://bit.ly/47lGiYX

05/10/2026

On Sunday 27th September, DEBRA held its first-ever Style & Smile event, created to give people living with EB the opportunity to feel celebrated, supported and confident.

From the moment they arrived, our members were welcomed by an incredible team of volunteers who helped create a space where everyone could relax, build confidence and celebrate their individuality. Just as importantly, it was an opportunity to connect with others in the EB community, share experiences and enjoy a truly special day together.

While we continue to work towards a better future for everyone affected by EB through research and fundraising, we're equally committed to supporting people living with the condition today. Style & Smile was a wonderful example of that support in action, providing a space where members could feel celebrated, connect with others who understand life with EB, and leave feeling confident and empowered.

A huge thank you to the talented stylists, makeup artists, photographers and volunteers who generously gave their time, skills and passion to make the event possible.

Most importantly, thank you to our wonderful members for embracing the experience and making the day so memorable. 💙

📸 Stay tuned for a closer look at the stunning portraits and photos captured throughout the day.

Looking for more opportunities to connect with the EB community? Find out about upcoming DEBRA member events and activities here: https://bit.ly/4oRjHJL

04/10/2026

Our next Research & Health Webinar will be in conversation with Dr Gernot Walko, Senior Lecturer at the Centre for Oral Immunobiology and Regenerative Medicine at Queen Mary University of London.

Join the webinar on Wednesday 7 October 2026 at the usual time of 1pm, to find out more and ask your questions about…

💠How the genetic changes in JEB causes skin wounds
💠How the ways that cells communicate with each other and respond to tissue injury (cell signalling) are altered in JEB skin and how this impairs wound healing
💠How future treatments might be able to reinstate normal signalling to improve healing of JEB wounds

Missed one of our Research & Health Webinars?

No worries - they're available to watch on our website. Register or watch now 👉 https://bit.ly/3Z08c6P

02/10/2026

Recordings from the 2026 DEBRA Care Conference are now available to watch online.

Hosted by debra of America, the conference brought together leading EB experts to share the latest knowledge, research and practical guidance on topics that matter most to people living with epidermolysis bullosa (EB), including many of the issues our members and their families tell us are most important to them. 🦋

The first recordings cover areas including EB management, bone health and wound care, with additional sessions set to be released in the coming months.

🖥️ Watch the recordings and learn more: https://bit.ly/3Vi4bwu

Attend the debra Care Conference to connect with and support the Epidermolysis Bullosa (EB) community and get the latest research and treatment updates.

01/10/2026

🔬 Research blog: Towards better pain relief by understanding pain in DDEB 🔬

Pain is one of the biggest challenges faced by people living with dominant dystrophic epidermolysis bullosa (DDEB), yet current treatments often do not provide enough relief.

Thanks to funding from DEBRA UK, Dr Luke Pattison and the team at the Monash Institute of Pharmaceutical Sciences in Melbourne are investigating how changes in the skin communicate with the nervous system, with the aim of uncovering new opportunities for more effective, targeted pain treatments.

By studying the biological processes that drive pain in DDEB, the researchers hope to identify new ways to reduce pain and improve quality of life for people living with EB.

💬 “Although research takes time, every new insight helps us move closer to effective and targeted therapies.” – Dr Luke Pattison

Read the blog: https://bit.ly/4ht6cNL

I’m Luke Pattison, a neuroscientist working with the Integrated Neurogenic Mechanisms Group at the Monash Institute of Pharmaceutical Sciences in Melbourne, Australia. Our team was recently awarded funding from DEBRA UK to investigate pain in dominant dystrophic epidermolysis bullosa (DDEB) and id...

01/10/2026

🎉2027 Holiday home bookings are now OPEN for all DEBRA members!

With exclusive member rates that can be up to 75% lower than standard holiday prices, there's never been a better time to book your 2027 DEBRA holiday.

Our holiday homes are designed with comfort, accessibility, and family-friendly features in mind. Each holiday home offers the perfect getaway for members living with EB and their carers, family, and friends.

💙 We cannot wait to welcome you and help create special holiday memories in 2027!

🔗 Learn more: https://bit.ly/4dK4mHO

01/10/2026

"There are no days off, there are no shortcuts, there are no holidays from EB."

The words shared by parents Erin and Calum during our 11th Great Chefs Dinner touched everyone in the room and highlighted exactly why support for the EB community is so important.

Thanks to the incredible generosity of our guests, sponsors, chefs and supporters, the evening raised over £165,000 to help support people living with EB today and fund research for better treatments tomorrow.

To everyone who joined us, thank you for standing with the EB community. 🩵

🎥 More event highlights and video content coming soon.

🔗 Read more about this special evening: https://bit.ly/4hx9AqT