UK Rare Disease Framework published

The UK Rare Diseases Framework was published in January, highlighting the priorities and underlying strategic themes that detail how the UK will address the challenges faced by those living with rare diseases.

The UK Rare Diseases Framework outlines 4 high-level priorities for rare diseases in the UK over the next 5 years:

  • helping patients get a final diagnosis faster
  • increasing awareness of rare diseases among healthcare professionals
  • better coordination of care
  • improving access to specialist care, treatments and drugs

We look forward to the implementation of recommendations and an increasing emphasis on the patient voice.

https://www.gov.uk/government/publications/uk-rare-diseases-framework/the-uk-rare-diseases-framework