Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he has taken to promote continued UK co-operation and collaboration with (a) EUROCAN and (b) other European Reference Networks.

The Government has noted the importance of continued collaboration with European partners in the 2017 policy paper ‘Collaboration on Science and Innovation: A Future Partnership Paper’. The paper expressly cited European Reference Networks (ERNs) as an example of collaboration that the United Kingdom and European Union should discuss in the negotiations, given the mutual benefits.

The Government published the UK Strategy for Rare Diseases in 2013, which set out a vision to 2020 covering five areas including patient empowerment, identification and prevention of rare diseases, diagnosis and early intervention, coordination of care and the role of research. ERNs are a key way to deliver the five themes of the UK Strategy for Rare Diseases Strategy. The UK participates in 23 of 24 ERNs across a total of 113 separate Healthcare Providers in England and the devolved nations, including in ERN-EURACAN.