01709 210151 / 07716 135940 kerry.leeson@alstrom.org.uk

The Department of Health and Social Care has published its latest update to its Rare Disease Strategy implementation plan. This is the second iteration of this document, following the previous progress report that was published in February 2019. The document reviews DHSC’s progress on implementing the Strategy and takes a forward look at outstanding actions for 2020.

The document 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. While details on when we might expect publication of the National Conversation on the rare disease framework are unclear, it is good to see that this is being developed.

The strategy’s progress covers 5 main areas:

  • empowering those affected by rare diseases
  • identifying and preventing rare diseases
  • diagnosis and early intervention
  • coordination of care
  • the role of research

The 2020 update sets out the actions and commitments which were agreed to and how the DHSC and partner organisations have progressed and actioned these over 2019/20.

You can find the full document HERE