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

Introduction

This report provides an update on progress made in delivering the 18 actions of Scotland’s Action Plan for Rare Diseases (2022) which supports the shared priorities set out in the UK Rare Diseases Framework. It also provides an update on the priorities set out in our first Progress Report (2024), and will inform our future strategic approach to rare conditions in Scotland.

The UK Rare Diseases Framework was originally intended to run from January 2021 to January 2026, with each nation setting out its national priorities in a dedicated Action Plan to be delivered during this period. In October 2025, the four nations agreed to extend the UK Framework, and as a consequence our Action Plan, by one year. This extension is intended to allow sufficient time for meaningful engagement and planning to inform strategic arrangements from 2027 onwards.

We will continue to work collaboratively with our four‑nation counterparts to monitor progress, exchange best practice, and represent Scotland’s position. This partnership will be central to informing and shaping our future strategic approach.

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