Scotland publishes first Rare Disease Action Plan
In December, the Scottish government published their first action plan on rare diseases. Intended as a living document which will continue to evolve over time, the plan hopes to improve the lives of the estimated 412,080 people in Scotland living with rare diseases by implementing the priorities outlined in the 2021 UK Rare Disease Framework. As such, it puts forth actions which will be taken over the next 18-24 months, at which point the plan will be reviewed and modified as needed according to changes in the rare disease landscape.
Throughout the drafting of the plan, the government engaged extensively with the rare disease community in an approach meant to promote patient-centered care. In particular, this included a patient advisory group and a series of online events. In the foreword of the plan, Maree Todd MSP, the Minister for Public Health, Women’s Health and Sport specifically thanks patient organization Genetic Alliance UK for their support in facilitating said engagement activities.
The new plan consists of 18 specific actions, each working to support one of the priorities from the UK Rare Disease Framework: ensuring patients get the right diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatment, and drugs. The full action plan is available on the Scottish Government’s website.
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bartosb (24 mai 2023). Scotland publishes first Rare Disease Action Plan. ELSIBI. Consulté le 16 mars 2026 à l’adresse https://doi.org/10.58079/o6c3





