11 July 2019

Implementation Plan for the UK Strategy for Rare Diseases and progress report

Implementation Plan for the UK Strategy for Rare Diseases
NHS England 29 January 2018
  • The Plan sets out NHS England’s proposed actions against all of the commitments in the Strategy for which it has a lead responsibility. In particular, the Plan aims to address the following three objectives: 
    • Facilitating earlier diagnosis and intervention.
    • Improving care coordination. 
    • Promoting research.
  • Of particular note are the following key actions:
    • The continuing progress of the 100,000 Genomes Project and the concurrent development of a genomic testing strategy that will underpin the development of a new genomic medicine services for the NHS
    • The development of a set of criteria that will allow NHS England to hold providers to account for the way in which they treat patients with rare diseases via a rare disease ‘insert’ to the standard NHS Contract
    • The development of Rare Disease Collaborative Networks. These will be groups of providers who have a demonstrable research-active interest in a rare/very rare disease, with the aim of improving patient outcomes
Implementation Plan for the UK Strategy for Rare Diseases; progress report
NHS England 11 July 2019
  • This update reviews progress against the dashboard of performance measures set out in the Plan and is in the order set out in the Plan for ease of reference.