As part of our ongoing government lobbying campaign, we recently met Russell George MS at the DEBRA UK drop-in event held at the Welsh Senedd (parliament) in Cardiff.

Russell George, who is a member of the Welsh Conservative party, MS for Montgomeryshire, Shadow Minister for Health, and chair of the Welsh Parliament's Health and Social Care committee, was moved by meeting and chatting with some of our members in attendance who are living with the pain of EB in Wales, and he kindly offered to pose a question on our behalf within the Senedd.

The written question he submitted to the Welsh government this week was - what work is ongoing to support the development of new treatments for people living with epidermolysis bullosa? 

You can read the response received to Russell’s question from Eluned Morgan MS, and Minister for Health and Social Services in Wales here.

A request has been submitted for a follow-up meeting with Eluned to discuss some of the topics she raised in her response and in the meantime, we would like to thank Russell George for raising this important question in the Senedd. 

We look forward to continuing the conversation with Eluned Morgan and the health ministers in England and Scotland as we seek government support to accelerate our drug repurposing programme so that we can secure effective drug treatments for all types of EB.