Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps is she taking to provide people living with a rare disease equitable access to (a) diagnosis, (b) treatment, and (c) care.

In January 2021, the Government published the UK Rare Diseases Framework providing a national vision for how to improve the lives of those living with rare diseases. The framework lists four priorities collaboratively developed with the rare disease community: helping patients get a final diagnosis faster, increasing awareness of rare diseases among healthcare professionals, better coordination of care, improving access to specialist care, treatments and drugs. The principles of the UK Rare Diseases Framework commit the four nations to “ensure any impacts on health inequalities are considered when developing action plans”.

Each year since 2021 we have published an England Rare Diseases Action Plan. On 29 February 2024, we published the third England Rare Diseases Action Plan, which is working to address these priorities. Several actions have been committed to in this year’s and previous years’ action plans that relate to equitable access to diagnosis, treatment, and care.