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March 01 2018

Position Statement from the ERN Coordinators Group on UK’s Involvement in ERNs


For the occasion of Rare Disease Day 2018, the European Reference Networks Coordinators Group (ERN-CG) released a position statement regarding the UK’s involvement in the ERN project post-Brexit.

The Network coordinators call upon the European Commission and the UK government to ensure that a solution is found so that the UK healthcare providers can remain in the ERNs and continue to participate in this revolutionary European project that is still in a crucial stage of its inception.

As The UK National Health Service (NHS) is involved in 23 of the 24 networks (around 40 NHS hospitals), and NHS Trusts are leading one quarter of these networks and many further leading on the delivery of outcomes from within their respective ERNs, the loss of these HCPs in the ERNs would have a negative impact for rare disease patients in both the UK and the EU.

They go on to outline the reasons (Pooling of scarce expertise, Improving access to high quality healthcare, The EU and the UK as a world-leader market for innovation and research, and Safe and sustainable supra-specialised workforce) why the UK needs to remain involved in the ERN project in order to assure the “the optimum possible outcomes for our patients.”

Read the full ERN-CG position statement here

EURORDIS equally published a statement entitled “EURORDIS calls on European Commission to secure UK Healthcare Providers’ post-Brexit involvement in European Reference Networks” that echoes the sentiment of the ERN-CG and that can be read here.

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