Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, how rare and neglected diseases are prioritised in research funding allocations.

Government responsibility for delivering research into rare diseases is shared between the Department of Health and Social Care, with research delivered via the National Institute for Health and Care Research (NIHR), and the Department for Science, Innovation and Technology, with research delivered via UK Research and Innovation, which includes the Medical Research Council (MRC).

The Department of Health and Social Care invests over £1.7 billion each year on research through the NIHR, including research on rare diseases, such as the RareCare study which aims to better understand what causes delays to diagnosis so we can take steps to address this.

The Government is committed to improving the lives of those living with rare diseases through the UK Rare Diseases Framework. Pioneering research is an underpinning theme of the framework. In the 2025 England Rare Disease Action Plan we introduced a new action to support rare disease research through changes to clinical trial regulations. For rare disease research, where patient populations are small and trial designs often complex, the flexibility and proportionality of this framework will enable more efficient set-up and conduct of clinical trials. We have also made significant investments to support rare disease research. This includes the Rare Disease Research UK Platform, a £14 million investment over five years from the MRC and the NIHR, announced in 2023, which is now established and positioned well within the rare disease research landscape. Further information the Rare Disease Research UK Platform is available at the following link:

https://rd-research.org.uk/nodes/