The Department of Health and Social Care (DHSC) this afternoon published its fifth Rare Diseases Action Plan for England, ahead of Rare Diseases Day tomorrow. It is the final plan that will be published by the DHSC under the current UK Rare Diseases Framework. You can access the full Plan here. Wales and Scotland have also published their progress reports, and we will share a note on those on Monday.
As expected, the focus is providing an update on the existing 39 actions committed to across previous plans – with some new detail and milestones added to existing actions. One new action is introduced on equity, which is Genetic Alliance’s theme for this year’s Rare Diseases Day. The action is the delivery aspect of the existing action 28 (integrating rare diseases into NHS England’s Core20PLUS5 framework). In 2026, DHSC will develop an implementation plan for embedding rare diseases into the framework, with the plan then delivered by 2028.
The Plan is again structured around the four priorities of the UK Rare Diseases Framework:
- Helping patients get a final diagnosis faster
- Increasing awareness among healthcare professionals
- Better coordination of care
- Improving access to specialist care, treatment and drugs
Detail on two underpinning themes is also included, following feedback from the patient advisory group: health equity and digital, data and technology.