Future for Rare | read our new report
Future for Rare: a new vision for rare conditions policy in the UK
Following our extensive Future for Rare campaign, we are proud to publish Future for Rare: A new vision for rare conditions policy in the UK. With the UK Rare Diseases Framework ending in January 2027, the report sets out what should come next for the more than 3.5 million people in the UK living with a rare condition. It draws on the views of the rare community and makes a clear recommendation to the governments of the four UK nations to commit to a successor policy for rare conditions.
Equity for rare conditions
Across the UK, more than 3.5 million people live with a rare condition. Yet they rely on a healthcare system that was simply not built with them in mind. Through our multi-stakeholder engagement across all four nations, there was a consensus that any future rare conditions policy must prioritise delivering equity for the rare community.
Access to diagnosis, coordinated care, treatment, and research must never depend on where someone lives, how rare a condition is, or a person’s capacity to fight for support. Equity does not mean delivering identical services everywhere. Instead, it means ensuring parity of opportunity through clear pathways, effective signposting, and timely referrals.
Our asks
To help deliver more equitable healthcare systems for people with rare conditions, we are calling on governments across the UK to:
- Renew a UK-wide policy framework and appoint a National Clinical Lead for rare conditions in each nation, protecting what the current Framework has built.
- Resource a national core data offer and embed diagnostic capability across the health system, so people with rare conditions can be found in NHS data and diagnosed sooner.
- Organise care through sustainable clinical networks and establish an annual national patient experience survey, so families no longer coordinate care alone and progress can be measured nationally.
Together, these recommendations would help to deliver faster diagnosis, joined-up care, and more equitable access to treatment and research, alongside holistic support to help people live well at all stages of life. By reducing repeated tests and emergency admissions, they could ease immediate pressures on the NHS while positioning the UK as an attractive destination for life sciences investment.
A UK-wide approach enables four-nation collaboration where it is in the best interest of all, providing the collective framework needed to support and strengthen delivery within each nation as health services reform. Because no single nation can address these challenges alone, a shared policy is essential to drive national priorities and ensure no one with a rare condition is left behind.
Can you help us secure a new UK rare conditions policy?
We have written to the Health Ministers in all four nations, asking them to commit to a renewed UK-wide rare conditions policy before the current Framework ends. However, Ministers are more likely to act when they hear from their colleagues. We are asking you to write to your elected representatives and ask them to write to the Health Minister in your nation, urging them to commit to a renewed UK-wide rare conditions policy before the UK Rare Diseases Framework ends in January 2027.
Find out how to contact your elected representatives on our Future for Rare campaign page.
What is next for the Future for Rare campaign?
We are very grateful to everyone across the rare community who contributed to this work, with particular thanks to our 11 thematic working groups whose expertise, evidence, and recommendations shaped this vision.
This work belongs to our community and we are now working to release the full wealth of findings and insights gathered throughout the campaign. We will be launching a dedicated Future for Rare hub early in 2027 to share these resources with you.
We will also share the report’s findings with the community through our Rare Disease Day hub.
Read our Future for Rare report and share it with your networks using #FutureForRare.