Health and Welfare webinars
Our Health and Welfare webinars are free online events held via Zoom. These relaxed events provide an opportunity for all members to connect with others, share experiences and ideas, and learn about topics that matter to the EB community. We also welcome guest speakers at these events, who can share expertise on different topics and answer questions from members.
So you don’t miss out and can still learn from our experts, we’ll use this page to not only show what’s coming up, but share recordings of previous webinars. There will also be Q&A’s from some of these webinars, giving you more helpful tips from our experts and the experiences of other members.
Upcoming Health and Welfare webinars
We’re excited to invite you to an insightful webinar led by one of our own community support managers, Gemma Turner, who brings a wealth of expertise and practical knowledge to this important topic. This session will explore how schools and colleges can effectively support children and young people living with Epidermolysis Bullosa (EB), ensuring they have equal access to education and a positive learning experience.
Join us to learn…
- A clearer understanding of EB and its impact within educational settings, including how it can affect attendance, wellbeing, and participation.
- Guidance on the Education, Health and Care Plan (EHCP) process, explaining how EB may meet SEND thresholds, and share practical strategies for implementing reasonable adjustments and inclusive practices.
Previous webinar recordings
Our April 2026 webinar featured Anya Delap and Christy Fowler, a hand therapist and physiotherapist, who shared their expertise on the importance of maintaining strength and movement in the upper body to achieve the best possible function.
Watch the recording to hear practical advice and guidance on improving movement, alongside key exercises and tips to support your back, shoulders, arms and hands.
In this session, Anya and Christy cover:
- Why maintaining upper spine movement affects how the shoulder moves
- Why shoulder and elbow movement is essential for everyday function
- The key exercises needed to maintain movement
- Practical tips and tricks for maintaining hand motion
- Tips and techniques to support overall function
At the end of the webinar, members had the opportunity to ask questions and share experiences and tips with one another, with Anya and Christy offering helpful responses and advice.
Please note: Any products or advice recommended in this video, and the Q&A transcript, are intended to help DEBRA members identify useful products and strategies through the sharing of the personal experiences of other DEBRA members and expert speakers.
Not all products or advice work for everyone in the same way, and these webinars do not allow for personalised advice. As everyone’s EB is different, we strongly suggest that you thoroughly research any product before using or purchasing it, and where applicable, seek the advice of your EB healthcare team.
DEBRA does receive any funding or benefits from any companies mentioned in the video, and neither do we endorse these particular products. DEBRA is not responsible for the outcome should you choose to follow the recommendations.
At our March 2026 webinar we were pleased to be joined by Ross Smith, a Stakeholder Executive for Healthcare at Motability Operations. Ross shared his expertise to help members learn more about the Motability Scheme – a programme that allows people with a disability to lease a new car, powered wheelchair or scooter in exchange for their mobility allowance.
Watch the recording to learn more about:
- The benefits of joining the Motability Scheme
- The eligibility criteria
- How the application process works
In the second half of the webinar, members also had the opportunity to chat with one another, share experiences and ask Ross their questions. Ross provided helpful insights and answered a wide range of queries from attendees.
More about this event’s guest
Ross has been on the Motability Scheme for over 20 years and is now a Stakeholder Executive for Motability Operations. He has also worked with and for the NHS for many years.
Ross has supported people with severe and enduring mental health conditions and helped them get back into paid employment. He previously worked as a Disability Consultant for Hampshire County Council, where he focused on access, inclusion and supporting disabled people to recruit personal assistants. He has also served on a variety of boards for organisations working to enhance the lives of disabled people.
For further information, please visit the Motability website.
Please note: Any products or advice recommended in this video, and the Q&A transcript, are intended to help DEBRA members identify useful products and strategies through the sharing of the personal experiences of other DEBRA members and expert speakers.
Not all products or advice work for everyone in the same way, and these webinars do not allow for personalised advice. As everyone’s EB is different, we strongly suggest that you thoroughly research any product before using or purchasing it, and where applicable, seek the advice of your EB healthcare team.
DEBRA does receive any funding or benefits from any companies mentioned in the video, and neither do we endorse these particular products. DEBRA is not responsible for the outcome should you choose to follow the recommendations.
In February 2026, we were joined by Paediatric Nurse Kirsty Walker, EB Adult Clinical Nurse Specialist Pauline Bates, and Dermatology Consultant Dr Catherine Jury from NHS Greater Glasgow and Clyde.
Watch the full recording below to hear about…
- How Scotland’s EB services work and how to make the most of your consultation.
- Tips for managing EB if you aren’t near a specialist centre.
- How families can better manage EB if they’re more isolated in a remote setting.
- How you can engage with EB services remotely.
- The different ways DEBRA can support you.
Please note: Any products or advice recommended in this video, and the Q&A transcript, are intended to help DEBRA members identify useful products and strategies through the sharing of the personal experiences of other DEBRA members and expert speakers.
Not all products or advice work for everyone in the same way, and these webinars do not allow for personalised advice. As everyone’s EB is different, we strongly suggest that you thoroughly research any product before using or purchasing it, and where applicable, seek the advice of your EB healthcare team.
DEBRA does receive any funding or benefits from any companies mentioned in the video, and neither do we endorse these particular products. DEBRA is not responsible for the outcome should you choose to follow the recommendations.
This topic was delivered as a podcast, giving you the chance to be part of an engaging and insightful conversation. You can watch the full recording below:
Rosie Jones also shared some great dietary tips with us for the latest issue of the EB Matters newsletter.
More about this podcast’s guest
Rosie is the specialist Dietitian for Epidermolysis Bullosa at Birmingham Children’s Hospital with over 25 years’ experience supporting families with this condition.
Whilst keeping up to date with research and contributing to guideline development she understands the importance of practical tips to help people enjoy food and eat their best diets.
Please note: Any products or advice recommended in this video, and the Q&A transcript, are intended to help DEBRA members identify useful products and strategies through the sharing of the personal experiences of other DEBRA members and expert speakers.
Not all products or advice work for everyone in the same way, and these webinars do not allow for personalised advice. As everyone’s EB is different, we strongly suggest that you thoroughly research any product before using or purchasing it, and where applicable, seek the advice of your EB healthcare team.
DEBRA does receive any funding or benefits from any companies mentioned in the video, and neither do we endorse these particular products. DEBRA is not responsible for the outcome should you choose to follow the recommendations.
At this event, in July 2025, we were joined by experienced healthcare professionals and dental specialists from Great Ormond Street Hospital.
Watch the recording to learn new oral health advice for people living with any type of EB. This session covers essential oral care tips, strategies and adaptations tailored to people with EB, dental procedures and more.
At the end of the webinar, the dental specialists took questions from members and shared more helpful advice.
Please note: Any products or advice recommended in this video, and the Q&A transcript, are intended to help DEBRA members identify useful products and strategies through the sharing of the personal experiences of other DEBRA members and expert speakers.
Not all products or advice work for everyone in the same way, and these webinars do not allow for personalised advice. As everyone’s EB is different, we strongly suggest that you thoroughly research any product before using or purchasing it, and where applicable, seek the advice of your EB healthcare team.
DEBRA does receive any funding or benefits from any companies mentioned in the video, and neither do we endorse these particular products. DEBRA is not responsible for the outcome should you choose to follow the recommendations.
At this event, in February 2025, we were joined by DEBRA UK member Kevin Kealy to hear about his professional experience in coaching for endurance training and athletics, and his top tips for taking on physical challenges whilst living with EB.
Kevin is a UK athletics and British Triathlon coach specialising in endurance events, and also lives with EB Simplex.
Watch the recording to hear Kevin’s experience with training and taking on physical challenges, tips about socks and footwear, suggestions from other members, and more.
At the end of the webinar, Kevin took questions from members and shared more helpful advice with his answers.
Please note: Any products or advice recommended in this video, and the Q&A transcript, are intended to help DEBRA members identify useful products and strategies through the sharing of the personal experiences of other DEBRA members and expert speakers.
Not all products or advice work for everyone in the same way, and these webinars do not allow for personalised advice. As everyone’s EB is different, we strongly suggest that you thoroughly research any product before using or purchasing it, and where applicable, seek the advice of your EB healthcare team.
DEBRA does receive any funding or benefits from any companies mentioned in the video, and neither do we endorse these particular products. DEBRA is not responsible for the outcome should you choose to follow the recommendations.
At this DEBRA Health and Welfare webinar, in April 2025, we were joined by specialist EB dietitian Natalie Yerlett for an insightful event on eating well with EB.
Watch the recording to discover practical tips to help you incorporate the essential nutrients you need to live better with EB.
Natalie is the Dietetic Lead for EB and Dermatology at Great Ormond Street Hospital, London, where she has worked for over 15 years and is currently Interim Head of Dietetics. Natalie joined the EB team over 10 years ago and has a passion for helping infants children and adolescents with all types of EB. Natalie is a supplementary prescriber and has published numerous research papers and articles in the field of EB. She has written a text book chapter on the nutritional considerations of EB and rare dermatological conditions. Natalie was part of the team who wrote the DEBRA CPG Neonatal guidelines, and she also sits on the CPG committee for enteral feeding in EB.
At the end of the webinar, Natalie took questions from members and shared more helpful advice with her answers.
Please note: Any products or advice recommended in this video, and the Q&A transcript, are intended to help DEBRA members identify useful products and strategies through the sharing of the personal experiences of other DEBRA members and expert speakers.
Not all products or advice work for everyone in the same way, and these webinars do not allow for personalised advice. As everyone’s EB is different, we strongly suggest that you thoroughly research any product before using or purchasing it, and where applicable, seek the advice of your EB healthcare team.
DEBRA does receive any funding or benefits from any companies mentioned in the video, and neither do we endorse these particular products. DEBRA is not responsible for the outcome should you choose to follow the recommendations.
In May 2025, we held our Members’ Weekend event. It was a wonderful occasion where we welcomed hundreds of members of the EB community, as well as some of the researchers DEBRA UK is currently funding.
You can watch their full presentations below to learn more about the EB research they are working on.
DEBRA UK Director of Research Dr Sagair Hussain gave a research update to begin the day before the presentations from researchers.
Professor Amy Paller’s presentation, ‘Repurposing systemic medications to help with the itch of EB’.
Dr Rob Hynds’ presentation, ‘Airway problems in EB’.
Dr Thomas Robinson’s presentation, ‘Sprayable sugar solutions slow scarring’.
At this DEBRA Health and Welfare webinar, in June 2025, we were joined by Professor Jemma Mellerio where she discussed the unique challenges of pregnancy and childbirth while living with EB.
Watch the recording to learn about the available care options, tips for managing this journey, and practical strategies for navigating these experiences.
Prof Jemma Mellerio is a consultant dermatologist and lead for the adult EB service at Guy’s and St Thomas’ Hospital in London. She previously worked in the paediatric EB service at Great Ormond Street. In addition to 30 years’ clinical experience in EB, she has also been active in EB research across clinical studies, basic science and EB natural history.
At the end of the webinar, Prof Mellerio took questions from members and shared more helpful advice with her answers.
Please note: Any products or advice recommended in this video, and the Q&A transcript, are intended to help DEBRA members identify useful products and strategies through the sharing of the personal experiences of other DEBRA members and expert speakers.
Not all products or advice work for everyone in the same way, and these webinars do not allow for personalised advice. As everyone’s EB is different, we strongly suggest that you thoroughly research any product before using or purchasing it, and where applicable, seek the advice of your EB healthcare team.
DEBRA does receive any funding or benefits from any companies mentioned in the video, and neither do we endorse these particular products. DEBRA is not responsible for the outcome should you choose to follow the recommendations.
At this DEBRA Health and Welfare webinar, in September 2025, we were joined by Mark O’Sullivan, podiatrist at Solihull Hospital, for a free, informative and supportive session on foot health for people living with any type of EB.
Watch the recording below to learn about practical self-management techniques to help you care for your feet at home, as well as options for sourcing local podiatry treatment in your area.
Mark qualified as a Podiatrist and Chiropodist from the University of Wales Institute, Cardiff, in 2003. He now works for the NHS, alongside private practice. He has over 20 years of experience, and has developed specialisms and pursued further studies in areas such as biomechanics, acupuncture, dermatology, diabetes care, nail surgery, steroid injections, and verruca needling. Mark works across various roles at Solihull Hospital, Birmingham Children’s Hospital, and Solihull Community Services and is part of a national specialist service for patients with EB.
At the end of the webinar, Mark took questions from members and shared more helpful advice with his answers.
Please note: Any products or advice recommended in this video, and the Q&A transcript, are intended to help DEBRA members identify useful products and strategies through the sharing of the personal experiences of other DEBRA members and expert speakers.
Not all products or advice work for everyone in the same way, and these webinars do not allow for personalised advice. As everyone’s EB is different, we strongly suggest that you thoroughly research any product before using or purchasing it, and where applicable, seek the advice of your EB healthcare team.
DEBRA does receive any funding or benefits from any companies mentioned in the video, and neither do we endorse these particular products. DEBRA is not responsible for the outcome should you choose to follow the recommendations.
At this DEBRA Health and Welfare webinar, we were joined by Denise and Lesley from Bullen Healthcare. Whether you’re already using Bullen’s service or not, you can watch the recording below to learn everything you need to know about making the most of what Bullen offers…
- What goes on behind the scenes at the Bullen prescription delivery service
- All the benefits of joining their service
- Planning your orders
- Tips for ordering everything you need for the festive period
At the end of the webinar, Lesley and Denise took questions from members and shared more insights about Bullen’s service. You can read the full Q&A below to learn more.
Please note: Any products or advice recommended in this video, and the Q&A transcript, are intended to help DEBRA members identify useful products and strategies through the sharing of the personal experiences of other DEBRA members and expert speakers.
Not all products or advice work for everyone in the same way, and these webinars do not allow for personalised advice. As everyone’s EB is different, we strongly suggest that you thoroughly research any product before using or purchasing it, and where applicable, seek the advice of your EB healthcare team.
DEBRA does receive any funding or benefits from any companies mentioned in the video, and neither do we endorse these particular products. DEBRA is not responsible for the outcome should you choose to follow the recommendations.