From left to right: DEBRA Director of Research, Dr Sagair Hussain, DEBRA Chair of Trustees, Jim Irvine, Lord O’Shaugnessy, DEBRA CEO, Tony Byrne.

Yesterday (10^th January) we took another step on our government campaigning journey with a meeting held in Westminster with Lord O’Shaugnnessy, who was Parliamentary Under Secretary at the Department of Health between 2016 and 2018.

The meeting, which was attended by our Chair of Trustees, Jim Irvine, CEO, Tony Byrne, and Director of Research, Dr Sagair Hussain, was an opportunity to share with Lord O’Shaugnessy (Secretary at the Department of Health between 2016 and 2018) the progress we have made to date with our drug repurposing programme and some of the challenges we are facing. It was also an opportunity to get his advice on what we can do to increase our chances of securing off label approval for clinically tested repurposed drugs through the NHS.

The meeting was very helpful and has given us several potential avenues to explore. We are very grateful for Lord O’Shaugnessy’s time and interest in EB, and for the continued support of our local MP, James Sunderland whose office helped arrange this meeting.

We look forward to further dialogue over the coming months with Lord O’Shaugnessy as we continue our mission to secure effective drug treatments for every type of EB.