DEBRA UK

10/06/2026

Support when you need it - available for DEBRA members through Wisdom 🌿

As a DEBRA member, you have access to Wisdom, which offers multiple ways to get help, guidance and reassurance - whenever it suits you. You can access:

📹 Video call support: connect face-to-face with a trained team member to talk through whatever you’re dealing with. A safe, supportive space - right from your phone.

📞 24/7 helplines: need to talk to someone urgently? You can call the UK helpline 24 hours a day, 365 days a year on 0800 028 0199

⏰ Request a call-back: prefer to speak at a time that works for you? You can submit a call-back request, and a team member will reach out as soon as possible.

Whether you need immediate help or want support arranged around your schedule, Wisdom makes it easy to connect with someone who can listen and guide you. 💙 Find out more: https://bit.ly/4qW3wLq7

10/06/2026

We’re delighted to share some special news 💙

After more than 25 years of dedication to DEBRA and the EB community, former Chair of Trustees Jim Irvine has been appointed as an Honorary Life Patron.

From first learning about EB at a DEBRA golf day, to helping guide the charity through transformative research milestones and the challenges of the pandemic, Jim’s impact has been extraordinary. His leadership has helped keep people living with EB at the heart of everything we do - bringing us closer to effective treatments.

Thank you, Jim, for your ongoing commitment to stopping the pain of EB.

👉 Read more about Jim’s journey and impact here: https://bit.ly/4aB0jLG

09/06/2026

DEBRA Members: Join our July webinar! 🖥️

We’re excited to invite you to an insightful webinar on 'Supporting children and young people with EB in education', led by our very own EB Community Support Manager, Gemma Turner. With her wealth of expertise and practical knowledge, this session is not to be missed!

📅 Tuesday 7th July
🕛 12:00pm to 1:00pm

This session will explore how schools and colleges can effectively support children and young people living with EB, helping to ensure equal access to education and a positive, inclusive learning experience.

Join us to learn:
✔️ A clearer understanding of EB and its impact in educational settings, including attendance, wellbeing, and participation
✔️ Guidance on the Education, Health and Care Plan (EHCP) process and how EB may meet SEND thresholds
✔️ Practical strategies for reasonable adjustments and inclusive practices in schools and colleges

This is a fantastic opportunity to gain valuable insights and ask questions.

Sign up now: https://bit.ly/4x3JYc4

08/06/2026

At DEBRA, everything starts with our members 💙

Our new 2027–2029 strategy has been shaped by the voices, experiences and priorities of the EB community - making sure that everything we do continues to reflect what matters most to our members.

From member insight projects to research and collaboration, your input has helped guide the direction of DEBRA UK for the next three years - so we can focus our efforts where they’re needed most.

Thank you so much for helping shape what comes next. 🦋

Read more about the strategy and what it means for you: https://bit.ly/4v4SDtG

08/06/2026

🔬 We’re proud to be one of 89 charities awarded a share of National Institute for Health and Care Research's £37m investment, supporting 800+ early-career researchers.

This funding will help our researchers at a crucial stage of their careers, empowering them to drive future breakthroughs that save and improve the lives of people living with epidermolysis bullosa (EB). 🩵

Find out more: https://bit.ly/4aft801

07/06/2026

DEBRA UK Research Webinar reminder 📺

Our next Research & Health Webinar is on Wednesday 10th June 2026 at the later time of 8pm. Dr Emily Gorrell, Assistant Professor of Dermatology at the University of Colorado, will give an overview of RDEB gene therapy.

Join the webinar to find out more and ask your questions about...

🔹Gene therapy carried out on cells outside the body
🔹Clinical trials on gene therapy
🔹Current progress

Won't be able to make it? No worries - it will available to watch on our website!

Register or watch now: https://bit.ly/3Z08c6P

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

06/06/2026

☀️ Final summer holiday availability is now live for DEBRA members!☀️

If you’re still hoping to enjoy a seaside escape or a peaceful break surrounded by stunning scenery, don’t miss your chance... these are our final remaining dates for Summer 2026, and once they’re gone, they’re gone!

🔹Windermere: Friday 31st July - Friday 7th August (peak dates)
🔹Weymouth White: Friday 1st August - Friday 8th August (peak dates)
🔹Newquay: Friday 21st August – Friday 28th August (peak dates)

Now’s the perfect time to get in touch and secure your getaway. Find out more: https://bit.ly/4dK4mHO

Ready to book? Get in touch with our friendly Holiday Homes Team for more info 📧 [email protected]

05/06/2026

A huge thank you to NWVA Group for an amazing £55,000 donation 💙

Raised through a charity football match at West Ham’s London Stadium, this support will help us continue our work for people living with EB - a painful genetic skin condition that needs greater awareness and funding.

Commenting on the donation, CEO Tony Byrne said:

“We are incredibly grateful to Stephan and his team at NWVA, as well as the members of the National Body Repair Association who fielded teams on the day and helped make the event such a success. As a charity, we do not receive statutory funding and therefore rely on fundraising to support our vital work. Donations like this make a real difference, and we are thankful to have long-term supporters such as NWVA helping us achieve our mission.”

📰 Read more: https://bit.ly/4voQIQb

05/06/2026

🌍 This World Environment Day, your wardrobe could make a difference.

Every time you donate or shop at a DEBRA UK charity shop, you’re doing more than refreshing your style - you’re helping reduce waste and support people living with epidermolysis bullosa (EB).

Your pre-loved items help:

👕 Keep clothes out of landfill
🛍️ Give items a second life
💙 Fund vital care and research for EB

It’s a simple step that creates real impact. If you’ve been meaning to have a clear-out, this is your sign - drop off a bag at your local DEBRA shop and be part of something bigger.

Not sure where your closest shop is? No problem, just use our helpful shop finder: https://bit.ly/3Z1Dz0S

04/06/2026

💙 We’ve heard from many of you about the challenges of getting the right prescriptions for epidermolysis bullosa (EB) - and our new survey findings show just how widespread this issue is.

🔎 Our key findings were:

• 79% of respondents have experienced issues with prescription fulfilment
• 45% did not receive all prescribed items
• 33% were given substitute dressings

For people living with EB, missing or substituted items can lead to increased pain, risk of infection, and further harm.

We also know many families are facing long, costly journeys to access specialist care - adding even more pressure.

Read the full article on our website: https://bit.ly/4o2BldP

👉 Have you experienced similar issues with prescriptions or accessing treatment?

Please know we are listening - and we are fighting for change, including clearer guidance for GPs and better support for families who need to travel for specialist care.

Together, we can help make sure everyone affected by EB gets the treatment and support they need 💙

The consequences of missing or substituted items can be distressing and extremely serious for people with EB, with improper or inconsistent wound care leading to further harm, including the risk of infection.