Rare disease action plan: progress report 2026

7. Conclusion

The publication of this report reflects the progress achieved so far under Scotland’s Rare Disease Action Plan and the UK Rare Diseases Framework. This progress has been made possible through strong collaboration across government, the NHS, academia, the third sector, and, most importantly, people living with rare conditions and their families.

Scotland remains fully committed to improving the lives of people with rare conditions. The insights and strong partnerships built to date provide a strong foundation for future work.

We have been working with our four nation counterparts to consider what should follow the current UK Framework. Over the year ahead, our focus will be on continuing to implement our Action Plan as well as shaping proposals for the next phase. This will include renewed engagement with stakeholders and the rare conditions community to ensure that future priorities continue to reflect their needs.