Question to the Department of Health and Social Care:

To ask His Majesty's Government what steps they are taking to ensure equitable access to specialised care and support for patients with rare diseases across England.

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, which are: 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 principles of the UK Rare Diseases Framework commit the four nations to ensuring that any impacts on health inequalities are considered when developing action plans.

Each year since 2021 we have published an England Rare Diseases Action Plan, with health equity highlighted as a focus area. 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 and previous year’s action plans, that relate to equitable access to specialised care and support for patients with rare diseases.