SHCA welcomes UK Strategy for Rare Diseases and looks to implementation


The Department of Health has now published the UK Strategy for Rare Diseases in response to an EU Council Recommendation on the subject from 2009.

The SHCA was part of the Rare Diseases Stakeholders Forum which fed into the development of the Strategy, and welcomes the Strategy’s vision for a joined-up approach to services for people with rare conditions across the UK. The Alliance is pleased to note that the Strategy reflects several of the recommendations from its 2011 report, Leaving no one behind, concerning issues such as diagnosis, networks and the role of registers.

By the end of February 2014, each country of the UK will need to develop a national implementation plan. This will naturally be an important focus over the coming months, with a view to ensuring that the Strategy’s commitments can be realised in the context of different health systems.

The UK Strategy for Rare Diseases is available here