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Government confirms UK Rare Disease Framework extension until 2027

27/11/2025

The Government has confirmed a one-year extension of the UK Rare Disease Framework – the UK-wide framework and associated national action plans had been due to come to an end in 2026 after five years. 

Ashely Dalton MP, Parliamentary Under-Secretary of State for Public Health and Prevention at the Department of Health and Social Care (DHSC) has confirmed that an agreement had been reached between the four UK nations to continue the Framework until 2027. The additional year will focus on developing proposals for future approaches to rare disease policy in collaboration with the rare disease community and devolved administrations. 

Still more work to do 

Together with colleagues from across the sector, The Alliance had called for this vital work to improve services and support for people affected by rare conditions to continue past 2025/26.  

Rare conditions are individually rare but collectively common, with around half of rare conditions being neurological in nature. We are incredibly grateful to our rare conditions members and other key voices across the sector for advocating for a continuation of the Framework, keeping rare conditions a priority and working to address the key challenges facing people affected by rare conditions. 

The UK Framework and associated national action plans have focused on developing actions around four key priority areas: 

  • helping patients get a final diagnosis faster  
  • increasing awareness among healthcare professionals  
  • better co-ordination of care  
  • improving access to specialist care, treatment and drugs  

While important progress has been made since the Framework was established in 2021, there is still more work to do to ensure that people affected by rare conditions can access the right treatment, care and support at the right time. 

Sam Mountney, Policy and External Affairs Manager at The Neurological Alliance, said: 

“We are pleased that the government has listened to calls from across the sector to safe-guard progress and drive improvements in rare disease policy by extending the vital work of the UK Rare Disease Framework.  

This has never been more vital, and people affected by rare neurological conditions continue to face delays to diagnosis, insufficient care coordination and poor access to innovative treatments. 

It’s important that the year-extension is used wisely to co-produce approaches to rare disease service improvement that will continue to deliver for years to come. We are committed to working with government, members and people affected to ensure that the needs of the rare neurological community are at the heart of this process.” 

Next steps

Going forward we will continue to work with our rare conditions members to ensure the priorities of the rare neurological community are central to the future proposals. This includes through our role on the England Rare Disease Action Plan Patient Advisory Group – an advisory group for the England Action Plan led by the Department and Genetic Alliance UK.  

There are also other important opportunities to improve rare conditions services and support including the Rare Disease Quality Standard project – which is currently with the National Institute for Health and Care Excellence (NICE) for consideration – and the UK Neuro Forum which is heading into its second year with a focus on important policy areas including cross border care, workforce and emerging treatments.