England and Scotland have published action plans for 2026. They focus on four priorities:
- helping patients get a final diagnosis faster
- increased awareness of rare diseases among healthcare professionals
- better coordination of care
- improved access to specialist care, treatment and drugs
England
A new Action Plan for Rare Diseases 2026 was launched in England
Scotland
The Scottish Government has published a progress report for 2026
Progress reports from Northern Ireland and Wales
The Northern Ireland and Welsh Governments have published the following progress reports:
The Northern Ireland Government progress report 2024/25
The Welsh Government have published a progress report covering activities from 2024-2025
What’s ahead
Genetic Alliance UK, an umbrella group of which Immunodeficiency UK is a member, will oversee a process of engagement to gather and feed in the views of the rare disease community on the next Rare Disease Framework to the Governments.
The process will involve:
- A survey of the whole community across the UK, which will identify key challenges and opportunities
- A series of working groups that will consider themes arising from the survey in more detail and develop policy recommendations
- A summit and final report that will be shared with the Government in the autumn to seek to inform its thinking on the Framework’s successor.
We will keep you posted and how you can get involved.
Posted March 2026
