Government Update: Responsibility for Rare Disease Policy Transferred to Preet Kaur Gill, Parliamentary Under-Secretary of State for Health Innovation and Safety
In the recent reshuffles in Government, responsibility for rare disease policy has been transferred to Preet Kaur Gill, as the new Parliamentary Under-Secretary of State for Health Innovation and Safety. The previous minister with responsibiity was Sharon Hodgson MP. Preet Gill is an MP for Birmingham Edgbaston, and will now oversee the Medicines and Healthcare products Regulatory Authority Agency’s (MHRA) proposed Rare Disease Therapies framework. On 9th June answered a written question on rare disease related to Huntington’s Disease including the following reference to all rare diseases:
“The Government is committed to improving the lives of those living with rare diseases, including Huntington’s Disease. The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community. These include getting 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 fifth annual England action plan in February 2026 to report on the steps taken to advance these priorities. has most recently been our minister on rare disease. This change reflects a rebalancing of ministerial portfolios given the recent changes.”
The report mentioned is the England Rare Diseases Action Plan 2026 here.
You can find the UK Rare Disease Framework and the devolved governments action plans here.
Image source: www.gov.uk and used under the Open Government Licence v3.0.
