Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, in regard to the upcoming closure of the the UK Rare Diseases Framework, what alternative evaluation methods will be used to assess and ensure the continued improvement of access to specialist care, treatment and drugs for patients with rare diseases.

The UK Rare Diseases Framework was published following the National Conversation on Rare Diseases, which received nearly 6,300 responses. This helped identify the four priorities of the framework in tackling rare diseases: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatment, and drugs.

The Government remains committed to improving the lives of those living with rare conditions, and will be publishing the next England Rare Diseases Action Plan to update on these priorities as in previous years. The evaluation of England’s action plans is expected to complete in May 2026. We recognise that despite the progress that has been made there remains considerable unmet need for people living with rare conditions. Ministers from all four nations have agreed to extend the UK Rare Diseases Framework by one year to January 2027, recognising the continued relevance of its four priorities, including improving access to specialist care, treatment, and drugs. We will engage with the rare diseases community to help shape the next steps.