Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what information her Department holds on the number of people with Charcot-Marie-Tooth disease in (a) Rother Valley constituency and (b) 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, such as Charcot-Marie-Tooth disease. The framework lists the following 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.

To support with training for and awareness of rare diseases, National Genomics Education has developed a range of resources, including GeNotes. GeNotes puts innovative educational resources on genomics and rare diseases at the fingertips of healthcare professionals and includes information on Charcot-Marie-Tooth disease, which supports healthcare professionals to identify and manage this condition.