Our Members’ Weekend 2022 took place on the 14th and 15th May at Wokefield Estate, Reading, Berkshire.

It was wonderful to be together again at this year’s Members’ Weekend. After the experience of the past few years, it felt even more special being able to connect as a community. We hope you found it as worthwhile and inspiring as we did. Over 180 members came to Members’ Weekend, and so far over half have told us that meeting other members was what they most valued about the event.

Such an impact has been made on me to meet others who are the same.

Tears of joy hovering all weekend at being able to see friends old and new.

Absolutely loved the whole event! It was so much fun. The whole family enjoyed it too; there was something for everyone – thank you ever so much.

Seeing our son with EB, around his peers who also has EB. So much confidence because he felt safe – it was amazing seeing him free and so happy.

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), our staff, volunteers, and trustees who made it happen.

We would love to hear from you with your feedback about the day. Here is the link to the online survey for those who have not had time to complete a feedback form yet.


Our CEO, Tony Byrne, talking at the event, summed up the day as a fantastic opportunity to share experiences, learn from one another - and have some fun. 


For those who attended and those who weren’t able to, you can find videos and recordings of the presentations below. Just some of the highlights we all enjoyed were: 

  • research project updates from some of our leading EB researchers from the University of Birmingham 
  • an update on the ambitious new research strategy from DEBRA and plans for the future from DEBRA CEO, staff and trustees 
  • insights from well-being expert Anne-Marie Gawen and dietician Lynne Hubbard 
  • workshops from our EB specialist nurses and DEBRA Community Support Team  
  • creative sessions for all – from pom poms to card craft, comics and wellbeing journals 
  • circus skills, outdoor games and the DEBRA stroll 
  • live entertainment and disco at the evening party 
  • and just being together, indoors and outside, meeting new and old friends. 




'The wonders of vitamin C' by dietitian, Lynne Hubbard


'The science of happiness – how to be happy' by wellbeing expert, Anne-Marie Gawen


'DEBRA New Research Strategy' by Dr Sagair Hussain


'The DEBRA journey: changing lives faster together'


'New innovations to reduce scarring in EB patients' by Professor Liam Grover


'Walking in EBS patients and the Gait Project' by Valter Devecci


Our Sponsors

Thank you to our sponsors for supporting the DEBRA Members Weekend 2022. The generosity of our sponsors and corporate partners is vital for us to provide events like this for our members.

You can find more information on how your company can support DEBRA visiting our corporate partnerships page.


Urgo logo      

Bullen Healthcare logo   

Flen Health logo 

Molnlycke logo


We would also like to say a big thank you to the players of the National Lottery, whose donations have helped fund our annual Members Weekend via the National Lottery Community Fund.

National lottery community fund logo

Booking for this event has now closed.