In what is a very busy day in parliament, we are very grateful to have been able to meet earlier today (Tuesday 12th December) with Andrew Stephenson CBE, MP for Pendle and the new Minister of State for Heath and Secondary Care.

The meeting in Westminster was also attended by our local MP for Bracknell, James Sunderland, Tony Byrne and Dr Sagair Hussain from DEBRA, and Professor of Molecular Dermatology at King’s College London, Professor John McGrath, a leading national and international EB expert.

We took the meeting as an opportunity to engage with the new Health Minister, to bring him up to speed on the developments we have made with our drug repurposing programme, and to share with him some of the challenges we currently face in clarifying the clinical trial requirements for repurposing drugs for a rare condition such as EB, and then how we get the drugs approved in the NHS. 

Whilst no firm commitments were made in the meeting, the Minister was very interested in EB and rare diseases generally and shared our frustrations, and agreed to do whatever he can to support us in achieving our key objective, which is to secure effective drug treatments for every type of EB. 

We agreed to continue the dialogue with him and his office with a follow-on meeting scheduled for early 2024.

Thank you to the Minister for his time today, and to James Sunderland MP and Professor John McGrath for their ongoing support of DEBRA and the EB community.