Success for the campaign for new UK Rare Diseases Framework
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. Ashley Dalton MP (Parliamentary Under-Secretary of State for Public Health and Prevention), wrote to Genetic Alliance UK and Peter Dowd MP, Chair of the All Party Parliamentary Group (APPG) on Genetic, Rare and Undiagnosed Conditions, confirming the news of the extension. Read the Minister’s letter on the extension of the UK Rare Diseases Framework.
Why an extension to the Framework is needed
This extension is a positive development. Without it, the UK Rare Diseases Framework would have ended abruptly in January 2026 with no successor policy, no clear direction, and no guarantee that the significant positive strides of the last five years would be maintained.
We must also recognise that the health landscape across the UK is experiencing substantial change. There is a (relatively) new Government in Westminster leading major shifts like the English NHS 10-Year Plan and NHS England reform. There are upcoming elections in Scotland and Wales, and proposed changes to the healthcare landscape in the devolved nations . This one-year extension ensures that the vital work of the existing Framework can continue with the necessary platform for collaboration between the nations.
Most importantly, this extension gives our community a significant opportunity to be involved in the conversations about the future of rare disease policy in the UK. In many ways, this conversation has already begun. In 2025, Genetic Alliance UK published a comprehensive report informed by our members and the rare community, setting the scene for what a renewed UK Rare Diseases Framework could look like. The report, ‘More than you can imagine: opportunities for a future rare diseases framework’ proposes new opportunities for improving the lives of people with rare conditions.
The one year Framework extension means we can progress these conversations and set new rare conditions policy priorities in the context of the UK’s rapidly changing political and health environment.
What did Genetic Alliance UK do to help secure the future of the UK Rare Diseases Framework?
Genetic Alliance UK has been relentlessly campaigning for the renewal of the UK Rare Diseases Framework. We launched a ‘Manifesto for rare diseases’ with the Specialised Healthcare Alliance ahead of the 2024 General Election and released the impactful ‘More than you can imagine’ report launched on Rare Disease Day 2025. We have consistently called the UK governments to commit to a successor framework, capitalising on every opportunity to make this case. We’ve written to the new Secretary of State for Health and Social Care, meeting with the Minister at the Labour Party Conference, and advocating during the crucial period of NHS reform to ensure that the unique needs of the rare disease community are central to future policy. Read more about the steps we have taken below.
We also actively sought to encourage Ministers in the devolved nations to agree to this vital extension. Read our letters to Jenni Minto, Minister for Public Health and Women’s Health in Scotland and to Jeremy Miles, Cabinet Secretary for Health and Social Care and the responses we received.
What will Genetic Alliance UK do next?
While we celebrate this vital extension to the existing Framework, our work to secure a successor policy for the rare conditions community continues.
Genetic Alliance UK will now focus on two key objectives:
- We’ll remain deeply involved in the national delivery groups, supporting the implementation of the current Rare Diseases Action Plans across the UK.
- We will intensify our efforts to shape the successor policy, ensuring our members and their communities are at the very heart of the discussion. We will use the next year to provide as many opportunities as possible to ensure their voices and vision are heard.
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]
Ashley Dalton, Parliamentary Under-Secretary (Department of Health and Social Care), launches the 2025 Rare Diseases Action Plan for England at Genetic Alliance UK'S Rare Disease Day Parliamentary Reception in Westminster.
The campaign for renewal of the UK Rare Diseases Framework
The current UK Rare Diseases Framework comes to an end in January 2026 and there is strong support for renewing the Framework. The existing Framework has laid strong foundations and since its publication, new opportunities have emerged. Scientific developments have deepened our understanding of rare conditions and exciting innovations such as Artificial Intelligence (AI)-driven diagnostics, genomic testing, cell and gene therapies, and digital care support have progressed, presenting opportunities to improve health outcomes and reduce inequalities.
We cannot afford to lose momentum at this critical point. As we enter the final year of this Framework, we must make preparations for what comes next.
We are calling on the governments of the UK to commit to renewing the UK Rare Diseases Framework.
A manifesto for rare diseases
In March 2024, Genetic Alliance UK published a ‘Manifesto for rare diseases’ in partnership with the Specialised Healthcare Alliance (SHCA), a coalition of patient groups and corporate supporters who campaign on behalf of people with rare and complex conditions.
The manifesto, which formed the cornerstone of Genetic Alliance UK’s General Election 2024 pledge campaign, called on the next government to commit to building on the current UK Rare Diseases Framework by setting new ambitions for improving the lives of people with rare diseases over the next five years. The manifesto sets out our calls to action in more detail, including policy changes that could:
- Help patients get a timely diagnosis
- Increase awareness among healthcare professionals
- Improve the coordination of care
- Increase access to specialised care, treatment and drugs
Following the General Election, we wrote to the newly appointed Secretary of State for Health and Social Care, Wes Streeting, to emphasise the value of the UK Rare Diseases Framework. Read our open letter to Wes Streeting.
More than you can imagine: opportunities for a future rare diseases framework
To mark Rare Disease Day 2025, we launched the ‘More than you can imagine’ campaign. This included the publication of an impactful anthology of creative works that brought to life the experiences of individuals within the genetic, rare, and undiagnosed communities through poetry, personal stories, photography, and artwork. Alongside ‘More than you can imagine: an anthology of rare experiences’, we published a comprehensive report reflecting on the impact of the UK Rare Diseases Framework and setting the scene for what a renewed UK Rare Diseases Framework could look like.
The report, ‘More than you can imagine: opportunities for a future rare diseases framework’ recognises that the existing Framework has laid strong foundations and since its publication, new opportunities for improving the lives of people with rare conditions have emerged.
The report includes a clear call to the governments of the UK to renew their commitment to rare conditions and ensure that the successor to the existing UK Framework is supported by:
- Ring-fenced funding for each nation
- Well-resourced delivery teams for effective implementation
- Ongoing involvement of the rare conditions community
- Enhanced collaboration across the four nations, including joint initiatives
- Development of clear metrics to monitor progress and evaluate outcomes
- Regular reporting of progress to facilitate comparison and collaboration
We launched our report at Rare Disease Day receptions across the UK and the report was welcomed by the health ministers of the UK and each nation’s Rare Disease Delivery Groups
Media coverage of the campaign
Our report was also covered in national media. Our report was also covered in national media including a Rare Disease Day article from Metro featuring two families from our community, a story in the i Paper outlining the importance of the UK Rare Diseases Framework and the Telegraph Media Planet Rare Disease Supplement.
Making the case for a renewed UK Rare Diseases Framework in the context of NHS reform
This is a pivotal moment for the rare conditions community. The current UK Rare Diseases Framework concludes in January 2026, and services for rare conditions are on the brink of significant transformation.
The government has launched a new NHS 10 Year Health Plan for England, which could reshape healthcare delivery across England. This comes alongside proposals to merge NHS England into the Department of Health and Social Care.
We’ve strongly urged the government to ensure these reforms do not negatively impact services for rare conditions. We’ve also seized this opportunity to advocate for a renewed UK Rare Diseases Framework to safeguard and advance care for this community.
Find out more about our work on the NHS 10 Year Health Plan.
Find out more about our work on NHS England reform.