Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what recent progress the Government has made with the European Commission on the UK's relationship with the European Reference Network for rare diseases after the transition period.

Continued United Kingdom membership of the European Reference Networks beyond the end of 2020 remains subject to the outcome of negotiations with the European Commission. The European Reference Networks are not negotiated in isolation and instead form part of a complex set of interlinked policy issues that remain subject to ongoing negotiations with the European Union.

As part of the UK Strategy for Rare Diseases the Government has supported world-leading experts in rare diseases through clinical services and research. We remain committed to improving the diagnosis and treatment of rare disease patients through the new UK Rare Disease Framework, set to be published by the end of 2020, and the Genome UK strategy. Additionally, UK clinicians across all four nations have been asked to advise the Government on which elements should be retained if future participation in the ERNs is not agreed.