Rare Diseases: Health Services

Patient voice is an underpinning theme of the UK Rare Diseases Framework, and we are committed to ensuring that the patient voice is a key driver of the action plans published under this framework. The UK Rare Diseases Framework was published following the National Conversation on Rare Diseases, which received nearly 6,300 responses. This helped identify the four priorities of the framework in tackling rare diseases: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatment, and drugs.

The Government remains committed to improving the lives of those living with rare conditions, and will be publishing the next England Rare Diseases Action Plan for rare disease day in 2026, as in previous years. We recognise that despite the progress that has been made, there remains considerable unmet need for people living with rare conditions. Ministers from all four nations have agreed to extend the UK Rare Diseases Framework by one year, recognising the continued relevance of its four priorities. We will continue to engage with the rare diseases community to help shape the next steps.