On 29th February 2024, the Department of Health and Social Care published its England Rare Diseases Action plan for 2024.

This is England’s third rare disease action plan, aligned to the 2021 UK Rare Diseases Framework. It was developed with partners across the health system and in collaboration with people living with rare conditions. It builds upon previous action plans, detailing the progress made, as well as new commitments.

Although rare diseases are individually rare, they are collectively common – with 1 in 17 people being affected by a rare disease at some point in their lifetime. They can be both life-limiting and life-threatening, and disproportionately affect children.

The report focuses on everything from faster diagnosis to improved access to specialist care and treatment, as in underpinned by 4 cross cutting themes of patient voice, national and international collaboration, pioneering research in the rare disease landscape, and the use of data, digital and technology.

Our latest snapshot provides a summary of action plan:

Click here to access the full report.