Rare diseases action plan: progress report

2. Action plan progress

Aligned to the UK Framework, our Action Plan set out 18 actions which aim to progress care and support in four key priority areas:

• faster diagnosis
• awareness raising
• improving care coordination
• improving access to specialist care and treatment

Scotland’s Rare Disease Implementation Board (RDIB) continues to have oversight of the delivery of our Action Plan, and meet quarterly to monitor, co-ordinate and support the delivery of our actions. RDIB brings together key partners including representatives of rare condition patient and clinician communities, third sector partners and policy leads. Membership of RDIB was refreshed in 2023 to draw on a greater range of expertise.

Below is a summary of the key achievements and progress made against these four priority areas. Significant progress has been made, with several actions either concluded, or extended to include new milestones for the coming years. However, many areas across the Scottish health and social care system continue to be affected by the current challenging financial and operational environment, and the implementation of Scotland’s Rare Disease Action Plan is no exception. The ability to drive forward some of the actions has been impacted by lack of capacity and funding constraints. These constraints have led to a reduced ability to make progress on all aspects of the plan. As a result, some actions have not yet been fully realised and work in these areas will continue.