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Success! UK Rare Diseases Framework to be extended for another year!

We are delighted to share the fantastic news that health ministers across the UK have agreed to extend the UK Rare Diseases Framework by one year. This is a vital step and ensures continuity in rare conditions policy for our community. This extension means each nation can continue to deliver their Rare Diseases Action Plan, driving improvements in care for people with rare conditions and building on the foundations established over the last five years.

The extension to the Framework is a direct result of the tireless campaigning and unwavering dedication of the rare conditions community over the past 12 months. Your persistent advocacy has been instrumental in securing this extension. This success is a testament to your efforts, and we want to extend our heartfelt thanks to every single person who has championed this cause. Read about Genetic Alliance UK’s Framework campaign and our work to secure this much needed extension.

This is amazing news, and testament to our community's advocacy work. This year will give us both continuity for ongoing work and the time to remake the case that a) we need an overarching rare condition policy and b) it needs to be UK-wide. We now have a year to make this important case and I'm proud Genetic Alliance UK will be convening a multistakeholder conversation to deliver this message.

Nick Meade, Genetic Alliance UK Chief Executive

While we celebrate this news, we acknowledge that there is still significant unmet need within the rare conditions  community. As highlighted in our report, ‘More than you can imagine; opportunities for improving the lives of people with rare conditions’, too many in our community are still waiting years for a diagnosis, experiencing disjointed care, and struggling to access the vital services and treatments they need.

Your voices are needed more than ever. This one-year extension provides a valuable opportunity for our community to refocus, develop priorities, and shape what the future of rare diseases policy should look like. We recognise there is a lot of change ahead, including the implementation of the NHS’s 10-year plan and devolved elections, and this extension will allow us to shape a longer-term future once there is greater certainty about what the future of the NHS across the UK will look like.

Genetic Alliance UK will continue to work closely with rare disease teams in the four nations to ensure our community is at the centre of policy development and that your voices are heard loud and clear.

 

Our next steps

Genetic Alliance UK will now start work to deliver a major, multi-phased program of community engagement to understand what a future policy for rare conditions in the UK should look like. 

We are committed to ensuring that the experience and expertise of people living with genetic, rare, and undiagnosed conditions remain absolutely central to the development of health policy across all four UK nations.

Over the coming year, we will be working with the rare community to:

  • Establish a dedicated steering group to co-produce the engagement strategy
  • Launch a UK-wide community survey to understand the most pressing needs of our community
  • Create independently led working groups focused on key priority themes (like diagnosis and access) to develop actionable policy options

We’ll then bring all this work together for a multi-stakeholder summit in Autumn 2026 to build consensus on what a future rare conditions policy should look like. 

This multi-staged approach will deliver a clear, evidence-based mandate for a future framework that addresses the most pressing needs of the rare conditions community.

If you would like to be involved in the important work sign up to our newsletter for updates on how you can get involved, or contact our policy team by email at [email protected]