Rare diseases action plan: progress report

Scotland's rare disease action plan, published in December 2022, outlined steps to improve lives for those with rare conditions. This report reviews our initial progress, aligned with the 2021 UK Rare Diseases Framework.


7. Priorities for 2024 - 2025

There is much to be celebrated within this progress report, however, we know there is still more to be done to improve the care and treatment of those living with rare conditions. This progress report presents us with the opportunity for us to refresh our actions for the next phase of our Action Plan.

With a strong foundation to build from, we will aim to deliver focused actions in each of the 4 key priority areas in 2024-25. However, we will also continue to progress actions from the initial action plan, at a slower pace, reflecting the need to manage and allocate limited resource on areas that we believe will deliver improvements for those living with rare conditions.

We also continue to be aware of the challenges that face NHS services in Scotland and will continue to work closely with partners to ensure that improving the lives of those living with a rare condition remain at the heart of all that we do.

Contact

Email: rare.disease@gov.scot

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