James Sunderland MP giving a speech at DEBRAs house of commons reception

We commenced our government campaigning in May 2022 when 30 DEBRA members kindly wrote to their local politician to raise awareness of EB, of the challenges it creates for them and their families/carers, and of the need for government financial support to secure effective drug treatments.

This was an important first step and we built on this momentum with DEBRA receptions held in the House of Commons, the Scottish Parliament, and Welsh Senedd during 2023. These events created the opportunity to engage with more politicians including the health ministers from each of the devolved nations and led to EB adjournment debates taking place in the House of Commons and the Welsh Senedd, and an EB related parliamentary question being asked of the Scottish government.

We have made good progress but we haven’t yet secured any government financial commitment to support our drug repurposing programme and so it is important that we maintain our profile and ensure that EB remains on the government agenda.

You can BE the difference for EB and support us with this important initiative.

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 draft letters 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 support we can BE the difference for EB.

Other ways to get involved