Rare Diseases
The question
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to help improve health outcomes for patients with rare diseases, in the context of the recent announcement by NHS Specialised Commissioning on (a) dabrafenib and (b) trametinib.
Answered by Ashley Dalton
In January 2021, the Government published the UK Rare Diseases Framework providing a national vision for how to improve the lives of those living with rare diseases. The 2025 England Rare Diseases Action Plan was published on 28 February 2025.
Dabrafenib and trametinib are medicines mostly used for children with cancer. We are committed to getting the National Health Service diagnosing cancer earlier and treating it faster so that more children and young people survive, and we will improve young cancer patients’ experience across the system.
That is why on 4 February 2025 we relaunched the Children and Young People Cancer Taskforce to identify tangible ways to improve outcomes and experience for children and young people with cancer. The taskforce will explore opportunities for improvement across detection and diagnosis, genomic testing and treatment, research and innovation, and patient experience.
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