Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps he is taking to (a) improve early diagnosis, (b) increase funding for research and (c) improve access to specialist (i) support and (ii) treatment for patients with scleroderma.

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

Pioneering research is an underpinning theme of the Framework. The Department for Health and Social Care funds and supports research into rare diseases such as scleroderma through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health, including rare diseases. The usual practice of the NIHR and other research funders is not to ring-fence funds for expenditure on particular topics.

The 2025 England Rare Disease Action Plan includes information on research for rare diseases through significant investments to support rare disease research. This includes the Rare Disease Research UK Platform, a £14 million investment over five years from the Medical Research Council (MRC) and NIHR, announced in 2023, which is now established and positioned well within the rare disease research landscape. In December 2024, the MRC launched the first two MRC Centres of Research Excellence, both studying gene therapies, and each worth up to £50 million over 14 years.