Question to the Department of Health and Social Care:

To ask His Majesty's Government, with reference to the England Rare Diseases Action Plan 2023, whether they will publish an update on progress relating to the action to measure the time to diagnosis for both genetic and non-genetic rare conditions; how engagement will be carried out with the patient community once researchers are selected; and when this work will be finalised.

The National Institute for Health and Care Research works with the public to ensure there are opportunities to participate in research and that their perspectives and experiences help to shape research. Commissioning research, under action 17 of the England Rare Diseases Action Plan 2023 to measure the time to diagnosis, is currently in progress through an open competitive process. Announcements on the process for engagement with the patient community will be made once this process has been completed, and contracts agreed with successful bidders for the research.