Question to the Department of Health and Social Care:

To ask His Majesty's Government what steps they are taking to hold delivery partners, including NHS England, to account on the remaining incomplete actions in the England Rare Diseases Action Plan 2022, published on 28 February.

All delivery partners, including NHS England, report on progress at regular meetings of the England Rare Diseases Framework Delivery Group, which provides oversight and coordination for the delivery of England’s Action Plan. Progress reports are made available to stakeholders through the UK Rare Diseases Forum.

The next England Rare Diseases Action Plan is due to be published in early 2023 and will include a summary of progress to date against actions in the 2022 Action Plan and updated metrics and milestones for actions which are ongoing. The England Rare Diseases Framework Delivery Group will continue to meet regularly to monitor and report on progress against these ongoing actions.