Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what recent discussions she has had with NHS leaders to [a] assess the progress being achieved with the aims of the 2026 extension of the Rare Disease Framework and [b] and determine the needs to improve outcomes for people with rare diseases and conditions over the longer term.

Ministers from all four nations have agreed to extend the UK Rare Diseases Framework by one year, recognising the continued relevance of its four priorities.

The framework is overseen through UK-wide governance arrangements, including the UK Rare Diseases Framework Board, co-chaired by the Deputy Chief Medical Officer for England, and the Deputy Chief Medical Officer of the other devolved administrations on a rotational basis. The board last met on 20 February 2026 and provides high-level coordination of rare disease policy across the four nations.

Each United Kingdom nation also has its own delivery or implementation group to agree and monitor nation-specific action plans. We continue to engage with National Health Service leaders, delivery partners, devolved administrations, and the rare disease community, including through Genetic Alliance UK-led engagement, to inform future policy options and improve outcomes over the longer term.