Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what plans he has to improve healthcare provision for people with Friedreich’s Ataxia.

The Government is committed to improving the lives of those living with rare diseases, such as Friedreich’s ataxia. The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community. These are: getting 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. We published the annual England Rare Diseases Action Plan in February 2025, where we reported on the steps we have taken to advance these priorities.

NHS England has revised the national service specification for specialised neurology following extensive consultation. The service specification was published on 13 August 2025 and includes guidance on both specialised and core neurology services. The specification includes an Annex which provides greater clarity for neurology sub-specialties, including the categories of both movement disorders and neurogenetics into which Friedreich’s Ataxia would fall.

Additionally, the national specialised commissioning neurology transformation programme has developed guidance as part of an integrated care system toolkit, specifically to support the implementation of the service specification. Every specialised neurology centre could and should see patients with Friedreich’s Ataxia.