Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what plans he has to build on the UK Strategy for Rare Diseases to ensure the UK remains a world leader in research and innovation.

In October 2019 a survey targeting those living and working with rare diseases was launched by the Parliamentary Under Secretary of State for Innovation (Baroness Blackwood of North Oxford) to gather views about the major challenges faced by the rare disease community. The survey was open for six weeks and the responses will be used to feed in to the development of a framework to follow the UK Strategy for Rare Diseases after 2020.

The National Genomic Healthcare Strategy, due to be published in Spring 2020, will seek to create alignment between the United Kingdom’s world leading genomics assets and map out a clear direction of travel over the next five to 10 years that will enable the genomics community to drive forward innovation for the benefit of patients, including those with rare diseases.