Robin Durand
Project Lead, Rare Diseases International
As the UK Rare Diseases Framework ends, Genetic Alliance UK urges Governments across all four UK nations to renew their policy commitment and guarantee equitable care for everyone living with a rare condition.
The UK Rare Diseases Framework recognised that strategic policy was needed to improve care. However, with it ending in January 2027, and a successor policy still to be announced, the rare conditions community is calling for a renewed four-nation policy to maintain progress and address remaining gaps.
A united call for national strategy
This is not only a matter of fairness. Fragmented, reactive care is often more costly than coordinated care, driving avoidable hospital admissions and delayed diagnoses. It also undermines the UK’s ambitions in genomics and life sciences where rare condition research plays an important role. Allowing the framework to lapse without a successor risks losing ground on both fronts.
Genetic Alliance UK’s Future for Rare campaign has brought together over 1,000 people affected by rare conditions, carers, clinicians, researchers and industry leaders through a UK-wide engagement process including a comprehensive community survey, call for evidence, workshops and 11 expert working groups. The community’s ask is clear: for the progress made so far to be protected and for the systematic barriers that have held them back to be properly addressed.
Support is strong, with 91% of survey respondents
endorsing the original framework’s core priorities
Support is strong, with 91% of survey respondents endorsing the original framework’s core priorities. However, key gaps must be addressed, including integrated mental health services, non-healthcare support such as welfare and education and embedded care coordinators across all pathways.
Building clear accountability
Among the emerging recommendations from the expert working groups is designating senior named leads across national, regional and local tiers to establish clear points of responsibility and oversight. They also point to an annual UK-wide patient experience survey and a national disease registration baseline as mechanisms for monitoring success.
The Future for Rare campaign will culminate in an expert summit this autumn, but the community has already made its position known. Governments across the UK don’t need to wait to act. They should commit today to a successor policy and work with the rare community to co-produce what comes next.
