Westminster AbbeyOver the past 12 months we have been engaging with politicians to secure their support for our drug repurposing programme.

The activities we have engaged in thus far, which included over 30 members writing to their MPs in May 2022, led to an early day motion being submitted, and an adjournment debate taking place in parliament in May 2023 focused on EB. These activities have helped generate public and political interest and awareness for our campaign and on the back of them we now have several political supporters in Westminster and within the devolved nations to help garner support for our drug repurposing programme.

We do need to keep the momentum going though and secure the support of as many politicians as possible. To help achieve this we are hosting an evening reception within the House of Commons this June, which we hope will enable us to engage with more politicians, but we need your ongoing support too.

If you haven’t yet had chance to write to your local MP, MSP, or MS, we would be very grateful if you could as we want as many politicians as possible to meet with DEBRA members living within their constituency so that they get a real understanding of what EB is and the impact it has on those directly affected by it.

It is our hope that with a better understanding of EB, more politicians will lend their support to our campaign to secure the government financial support that will enable us to accelerate our drug repurposing programme.

To support you with this we have written a draft letter which you can use to email or write to your local MP, MSP, or MS.


Draft letter for England and Northern Ireland

Draft letter for Scotland

Draft letter for Wales


You can find their contact details by visiting the following websites:

Find your MP- England and Northern Ireland

Find your MSP- Scotland

Find your MS- Wales


Thank you for your ongoing support, with your help we can stop the pain of EB.