Future for Rare campaign

What’s happening now?

The current UK Rare Diseases Framework’s five year deadline has been extended until January 2027. The Minister with responsibility for rare conditions at Westminster has requested that the four nations submit their proposals for the future of rare conditions policy by autumn 2026.

The views of the rare community are essential to inform these governmental decisions. 

Genetic Alliance UK’s Future for Rare campaign is being delivered in collaboration with a Future for Rare Steering Group. This multi-stakeholder group includes lived-experience representatives, charity leaders, research and industry experts who ensure the process remains inclusive, transparent, and focused on delivering high-quality evidence to the government.

We need your input on what a future UK policy for rare conditions should look like.

What can you do?

• Run a workshop in a box

We have produced  the Future for Rare: workshop in a box toolkit  to help you gather and share your communities’ views. This toolkit provides tools and guidance to help host a workshop and capture community insights that will directly inform Genetic Alliance UK’s Future for Rare campaign. 

• A guide for facilitators/workshop hosts
• Presentation slide deck
• Feedback form to submit your findings by 22 June 2026 

When you run a workshop with your community, you’ll help us to understand what matters most to them and what challenges they continue to face. That insight becomes the evidence we need to make sure future policy actually works for the people it affects. Everything you need to host a workshop and share workshop feedback with us is included in the workshop in a box toolkit.

You can also run a Workshop in a box on a specific topic with relevant stakeholders to further inform the evidence considered by the working groups in the next phase of work. The outputs from your workshop will be fed directly into the working groups to inform their proposals.

Please submit your workshop feedback via this form by Monday 22 June 2026. If you have any questions or concerns about running a workshop, or you’d like help identifying the right stakeholders, get in touch via [email protected] and we can help.

• Future for Rare survey – now closed

The Future for Rare survey closed on Monday 4 May 2026. 

The survey was designed to capture a comprehensive picture of the experiences and unmet needs of people affected by rare conditions across the UK. Over 700 people from across the UK responded and the findings will directly inform the next phase of the Future for Rare campaign. 

• Call for evidence – now closed

The Future for Rare call for evidence closed on Monday 4 May 2026. 

We asked you to share existing reports, papers and publications which could further inform our understanding of the communities’ priorities and share existing rare condition policy recommendations. These will be analysed alongside the survey responses. 

• Stay informed: Sign up below for campaign updates to get involved in the working groups and summit.

Our next steps

Our Research Team is currently analysing your responses from the call for evidence and survey. Key themes from the findings have now been identified.

The next phase of the campaign will be driven by thematic working groups, which will transform these key themes and findings into robust principles that should shape future rare conditions policy in the UK. These groups will bring together people with lived experience, support organisations, clinicians, researchers and other experts to develop practical and realistic policy options. 

The working groups will consider the following themes:

1. Diagnosis

2. Rare care in the NHS

3. Care coordination

4. Access to medicines and treatments

5. Research

6. Advocacy, rights and representation

7. Digital, data and technology

8. Collaboration

9. Mental health

10. Non-healthcare intervention: social care, education and other support

11. Governance

This work will lead up to a national summit in September 2026, where the community and government leaders will meet to test and refine our recommendations. This ensures we can present a clear, united, and compelling case to the UK governments to inform future rare policy.

How did we get here? 

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 report ‘More than you can imagine: opportunities for improving the lives of people with rare conditions’ launched on Rare Disease Day 2025. We have consistently called on 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 2025, 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.

The campaign for renewal of the UK Rare Diseases Framework

The UK Rare Diseases Framework  has laid strong foundations and since its publication, new opportunities have emerged. Scientific developments have deepened our understanding of rare conditions and 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 improving the lives of people with rare conditions

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 improving the lives of people with rare conditions’ 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 

In July 2026, the government 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. 

We have also worked with parliamentarians to convey this message to the Minister. The All Party Parliamentary Group on Genetic, Rare and Undiagnosed Conditions wrote to the Minister in July 2025 to advocate for a dedicated rare conditions policy.

Find out more about our work on the NHS 10 Year Health Plan.

Find out more about our work on NHS England reform.