Take a look at some of the fantastic presentations we had at Members' Weekend 2024.

 

DEBRA UK CEO Tony Byrne's welcome presentation.

 

DEBRA UK Director of Research Dr Sagair Hussain's research introduction talk. You can also find an overview of our research and our current research projects here.

 

DEBRA UK member Vie Portland's talk, 'Championing Lived Experience Expert Voices', about how important the voices of people living with EB are.

 

DEBRA UK member Tony Kay's talk, 'Joining the DEBRA involvement network'. Tony talked about his experience of getting an EB diagnosis and joining our involvement network.

 

DEBRA UK member Iain Ritchie's talk, 'Taking part in research projects'. Iain shared his experience of being involved with our research and the difference members can make in EB research.

 

Dr Christine Chiaverini's presentation, 'Repurposing Apremilast for generalised severe EBS'. You can also read more about this research and Dr Chiaverini in her blog.

 

Dr Emma Chambers' presentation, 'Testing the use of anti inflammatory drugs to improve junctional EB'. You can also read more about Dr Chambers' junctional EB research here.

 

Dr Joanna Jacków's presentation, 'Permanent gene therapy for DEB'. You can also read a summary of Dr Jacków's research here.

 

Professor Andrew Thompson's presentation, 'Developing a self help toolkit for supporting wellbeing for parents'. You can also find out more about Professor Thompson's research project here.

 

Marta Kwiatkowska's presentation, 'Understanding EB patient information held within the NHS'.

 

A presentation from The Helix Centre about our involvement project to develop a new product for the EB community.