Policy and campaigning

The Impact Of Brexit On Rare Diseases

In the turbulent days since the UK voted to leave the EU, we have become deeply concerned about the impact this decision will have on rare disease patients, and on our Duchenne community.

The very nature of rare disease, small patient populations geographically spread out with scarce and scattered resources and expertise, means the DMD community has been uniquely placed to benefit from EU collaboration, crossing borders, uniting communities. So much so that in 5 years, more than €22million has been invested in DMD research through the EU’s FP7 and Horizon 2020 programmes. Patients are currently participating in potentially life saving trials in the UK, because of EU funding.

Our paper; Brexit: the impact on medical innovation and patients in the UK, uses real-life illustrations of the impact of Brexit already felt and imminently expected.

We’ve gathered testimony from patients and families living with Duchenne, CEOs from pharma already running trials, clinicians treating patients and key players in cutting-edge research into new therapies for Duchenne.

As Professor Katie Bushby says in our document:

“We risk a long time in the wilderness”.

Please read. Please share. And above all, please go and see your MP and give them this document. Let’s make our voices heard. 

Published on 8 July 2016

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