Where possible we try to encourage and support EB researchers to involve those affected by EB in all aspects of their research. This could include members helping to draft the “lay summary” section of their application, to make it more understandable to those who don’t work in the field of research.  Or it could be setting up a patient panel of people with lived experience of EB to advise the researchers on all aspects of their research project. 

We are currently working with Dr Su Lwin, an EB researcher and trainee dermatologist from Guy’s and St Thomas’s hospitals in London. Dr Lwin will be seeking funding later this year for an ambitious research project aiming to understand more about inflammation in all the different EB types and find new treatments for them.  Dr Lwin is hoping that people of different ages, with all different types of EB will be keen to be a part of her research project, whether as part of a patient panel, or taking part in the research itself. 

 

What is involved? 

We are at the early stages of scoping this out with Dr Lwin.  So all that would be involved is to attend an online meeting where, if you are a DEBRA member, you can find out about Dr Lwin’s research proposal and find out how you could be involved in it, if you choose.  This would be an hour-long Zoom meeting. 

You would not need to commit to any longer-term involvement at this stage. 

 

How do I take part? 

If you are a member aged 17 or over we would love you to join us on zoom for a recap of the project, and to understand the different ways you could be involved in the project if you choose to.

Please ask to join the group by emailing [email protected].  

If you are not yet a member, please see whether you are eligible to become one.