Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what support the Government is providing to people with fragile X syndrome.

On 9 January 2021, the Government published the United Kingdom Rare Diseases Framework, outlining four key priorities to improve the lives of those living with rare diseases such as fragile X syndrome. These include helping patients get a final diagnosis, increasing awareness of rare diseases among healthcare professionals, better coordination of care and improving access to specialist care, treatment and drugs. The Framework will be followed by nation-specific action plans, detailing how each nation of the UK will meet the shared priorities of the Framework. In addition, the NHS Long Term Plan sets out commitments for improving the health of people with a learning disability, including people with fragile X syndrome. Genomic testing for fragile X syndrome is included in the National Genomic Test Directory and is available in England via the NHS Genomic Medicine Service.