On 14 May the Welsh Government published the . This provides an update on progress made in relation to implementation of the UK Strategy for Rare Diseases in Wales and outlines priorities for the forthcoming year.
The report shows that while there has been some progress improving care for those living with a rare disease in Wales over the last year, there are still significant areas for improvement where further work and focus is required. Priority areas highlighted in the report include; developing clear referral and treatment pathways, improving awareness and education to aid early diagnosis and management of rare conditions and strengthening collaborative working across national work programmes in the UK.
In 2018, Wales hosted the annual bringing together patient organisations, clinicians and civil servants from all four nations to discuss the implementation of the UK Strategy for Rare Diseases. The annual update references this meeting, unfortunately neglecting to mention the conclusion of the day: the need to refresh and review the UK Strategy for Rare Diseases before the end of 2020.
With less than a year until the UK Strategy for Rare Diseases reaches its deadline, there is a continued importance for the Strategy. Progress is being made, but it was a clear consensus at the UK Rare Disease Forum Conferences of 2017 and 2018 that the Strategy must continue past the deadline of 2020, in order to maintain momentum. The Rare Disease UK campaign will continue to call for a review and refresh of the Strategy to ensure no one gets left behind because they have a rare disease, regardless of where they live.