Future for Rare campaign
The Future for Rare campaign is being coordinated by Genetic Alliance UK to inform what the future of rare conditions policy in the UK should look like.
A policy is an official plan that sets out what the government will do and why. It guides decisions and helps make sure the right things get done.
Since 2021, the UK Rare Diseases Framework has been the UK-wide policy which aims to improve the lives of people affected by rare conditions. It set out four priorities and five underpinning themes which we will consider during this campaign. Read Genetic Alliance UK’s factsheet on the UK Rare Diseases Framework.
Genetic Alliance UK’s ‘More than you can imagine’ report looked at what the Framework has achieved and what still needs to be done.
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?
- Complete the Future for Rare survey
The Future for Rare survey is designed to capture a comprehensive picture of current experiences and the unmet needs of people affected by rare conditions across the UK. Your input will help us understand key challenges and priorities, and will directly inform our recommendations to governments.
We welcome views from everyone with an interest in rare conditions – people affected by rare conditions, carers, family members, people working for support organisations/charities, healthcare professionals, researchers, and policymakers. Everyone’s views are important and will be considered equally.
Complete the ‘Future for Rare’ survey by Friday 24 April 2026.
- Respond to our call for evidence
We want to hear about the work you and others in your communities have already done. We encourage charities, researchers, and partners to share reports, policy recommendations, or findings relevant to the future of rare conditions care.
Please email your evidence to [email protected] by Friday 24 April 2026.
- Stay informed: Sign up for campaign updates to get involved in the working groups and summit.
Our next steps
After our survey and call for evidence closes, we will launch a series of focused, multi-disciplinary working groups to address the priority areas highlighted by the survey.
These groups will bring together people with lived experience, support organisations, clinicians, researchers and other experts to develop practical and realistic policy options. 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.