Rare Diseases: Research
The question
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to (a) increase funding and support for research into rare diseases and (b) improve early diagnosis pathways for patients.
Answered by Ashley Dalton
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 Diseases Action Plan we introduced a new action to support rare disease research through changes to clinical trial regulations. 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 Medical Research Council and the National Institute for Health and Care Research, announced in 2023, which is now established and positioned well within the rare disease research landscape. Further information on the Rare Disease Research UK Platform is available at the following link:
https://rd-research.org.uk/platform/
The first priority of the framework is to help patients get a final diagnosis faster. The 2025 England Rare Diseases Action Plan updates on progress, including: research we have commissioned to better understand what causes delays in diagnosis; the Generation Study, to pilot whole genome sequencing of newborns in the National Health Service; and the work of the NHS Genomic Medicine Service.
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