Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure children with primary ciliary dyskinesia receive similar care to those with cystic fibrosis.

The Government is committed to improving the lives of those living with rare diseases such as primary ciliary dyskinesia.

In 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; and improving access to specialist care, treatments and drugs.

The framework committed to nation-specific action plans and England published its second Rare Diseases Action Plan in February this year. The framework and action plans are not disease specific, but aim to improve the lives of all people living with rare diseases.