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UK Rare Disease Strategy

AGSD-UK keeps up with government policy on rare diseases in order to engage with consultations and be ready for any changes.

The Department of Health and Social Care (DHSC) has published its latest update to its Rare Disease Strategy implementation plan.

This is the second update of this progress report, published on 26 February 2020. The first being published in February 2019. The document reviews their progress on implementing their plan for England and takes a look forward to actions for 2020.

The report notes that the UK Rare Diseases Policy Board discussed the results of the National Conversation at their January meeting, where they also discussed the development of a framework to follow the strategy. When we might expect publication of the National Conversation or the rare disease framework is unclear, but it is helpful to see that a follow-on framework is still DHSC’s intention.

NHS England’s commitments are not considered in the document and a second NHS-specific progress report is planned for publication later in 2020.

Download the DHSC report “The UK Strategy for Rare Diseases”.