Rare Diseases: Health Services
The question
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to meet priority four of the policy paper entitled The UK Rare Diseases Framework, published on 9 January 2021.
Answered by Ashley Dalton
The Government is committed to improving the lives of those living with rare diseases. The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community, which includes priority four on improving access to specialist care, treatments, and drugs. We remain committed to delivering under the framework, and published the fourth England action plan on 28 February 2025.
Under priority four:
- we have worked with industry, clinicians, and patients to understand the challenges and opportunities of early access pathways for rare disease therapies;
- we have committed to continuing to keep the effectiveness of the schemes for rare treatments under review;
- the National Institute for Health and Care Excellence has launched a review of its highly specialised technology programme for evaluating rare disease treatments;
- introduced action 38 on reforming clinical trial regulations; and
- introduced action 39 on developing an operational framework for individualised therapies in the National Health Service.
For further details, the 2025 England Rare Diseases Action Plan is available at the following link:
https://www.gov.uk/government/publications/england-rare-diseases-action-plan-2025
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