On Saturday 14th May, we hosted our first DEBRA Members' Weekend since 2019. It was great to see so many members and families join staff and carers on a beautifully sunny day.

Activities including circus skills, craft workshops, outdoor games were combined with informative presentations by leading researchers from the University of Birmingham.

Professor Liam Grover talked about new innovations to prevent scarring in EB patients and Valter Devecchi outlined the challenges of walking for people with EBS, which gave our members the opportunity to find out more about current DEBRA research projects.

You can view some of the excellent presentations from Members' Weekend by clicking here.

Throughout the day, there were also opportunities to talk about dressing issues with EB Clinical Nurse Specialist, Gemma Harrison, a workshop to explore the problems of fragile skin and foot blisters, dietary advice and emotional support for the challenging times of living with EB from our Community Support Team.

Tony Byrne, DEBRA CEO, said:

What an absolutely fantastic day with our EB members. Thank you to everyone who worked so hard to ensure everyone had a great time. Lots of happy, smiling faces. When you meet our members who have EB, their families and carers, it only re-enforces our determination to improve their quality of life and ultimately find a cure. We are so grateful to everyone who enabled us to put together such a rewarding and enjoyable weekend.

Thank you to everyone involved in making this a wonderful event – all the members who travelled from across the UK to be there, our speakers and workshop leaders, our generous sponsors (Bullens, Flen Health, Urgo and Molnlycke) and our staff, volunteers and trustees.


Members' weekend sponsors: