Today (Tuesday 21st November), DEBRA CEO, Tony Byrne, along with our Director of Research, Dr Sagair Hussain, and Director of Fundraising, Hugh Thompson, met with Michael Gove, MP for Surrey Heath, Secretary of State for Levelling Up, Housing and Communities, and Minister for Intergovernmental Relations, and James Sunderland, MP for Bracknell, at Westminster.

In this productive meeting the team from DEBRA discussed with the minister the areas in which the charity needs his and the governments support to help improve quality of life for people living with EB. Topics discussed included how support is needed to ensure better access to existing EB specialist healthcare particularly for those members of the UK EB community who can’t easily travel to the existing EB centres of excellence in London and Birmingham. Also, the need for support of our drug repurposing programme which aims to test drugs already in the NHS through clinical trials to understand if they could benefit people living with EB.

We are very grateful for the minister’s time today and to James Sunderland for sponsoring this meeting, and we count on their ongoing support to help secure a meeting with the new Secretary of State for Health and Social Care so that we can continue this positive dialogue with her and get one step closer to a world where no one must suffer with EB.