Positive Step Forward: UK Rare Diseases Framework extended for another year! For the past five years, the UK Rare Diseases Framework has provided the foundation for UK rare disease policy. The community has rallied behind its priorities, but this essential government framework was scheduled to conclude in January 2026. However, in November 2025, we welcomed the fantastic news that health ministers across the UK have agreed to extend the UK Rare Diseases Framework for an additional year, ensuring continuity in rare conditions policy and action across all four nations. Minister Ashley Dalton who is responsible for rare diseases in Westminster, confirmed that the framework will now continue until 2027. This ensures vital momentum is maintained, allowing each nation to continue delivering their Rare Diseases Action Plan rather than ending abruptly, and builds on the foundations established over the last five years. What is the UK Rare Disease Framework? The UK Rare Diseases Framework, first published in 2021, sets out four priorities for rare diseases across England, Scotland, Wales and Northern Ireland: improving speed of diagnosis, awareness of rare conditions with healthcare professionals, care coordination and access to specialist care and treatments. All four nations have published Action Plans to help make the framework’s four key priorities a reality. In England alone, 39 actions were developed. England’s final Action Plan under the current framework will be published in February 2026 to mark Rare Disease Day. The UK Rare Diseases Framework provides a strategic direction for rare disease policy with nation-specific action plans to deliver change for the estimated 3.5 million people in the UK affected by rare conditions. Thank you Genetic Alliance UK! Genetic Alliance UK, a coalition of more than 200 charities and support groups, including the Addison’s Disease Self-Help Group, has been key to this extension of the framework. Together, we help build a unified and powerful rare disease community. As the saying goes, although rare diseases may be individually rare, they are collectively common! Genetic Alliance have consistently urged UK governments to commit to a successor framework and long-term rare disease policy. It is through their tireless campaigning and thanks to everyone who supports their work that the extension has become a reality. In response to confirmation of the extension, Genetic Alliance UK’s Chief Executive Nick Meade said: Why the Extension Matters Without this extension, the Framework and its associated delivery plans would have ended in early 2026, jeopardising hard-won progress and clarity about the future. The extension ensures our community can continue implementing the existing action plans while also preparing to influence what comes next. The current health policy landscape in the UK is changing, with the implementation of the NHS’s 10-year plan and devolved elections. The extension offers a valuable window to shape a longer-term future once there is greater certainty about what the future of the NHS across the UK will look like. Looking Ahead Over the next year, Genetic Alliance UK plans to deliver a major, multi-phased program of community engagement to understand what a future policy for rare conditions in the UK should look like. Activities will include: Establishing a dedicated steering group to co-produce the engagement strategy. Launch a UK-wide community survey to understand the most pressing needs of our community. Create independently led working groups focused on key priority themes (like diagnosis and access) to develop actionable policy options. Genetic Alliance UK will bring all this work together for a multi-stakeholder summit in Autumn 2026 to build consensus on what a future rare conditions policy should look like. This multi-staged approach will deliver a clear, evidence-based mandate for a future framework that addresses the most pressing needs of the rare conditions community. If you would like to be involved in this important work: Sign up to Genetic Alliance UK’s newsletter for updates on how you can get involved. Contact their policy team by email at [email protected] Read Genetic Alliance UK’s news item on the extension of the UK Rare Disease Framework. Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community. Become a member today! Join the ADSHG Connect on social media! Follow us on X/Twitter, Bluesky, Facebook, Instagram, LinkedIn, Threads, TikTok and YouTube. Manage Cookie Preferences