Policy paper

UK Rare Diseases Framework

A framework setting out a coherent, national vision on how the UK will improve the lives of those living with rare diseases.



The UK Rare Diseases Framework lists 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

Nation-specific action plans will be developed within 2 years of the Framework publication that will detail the steps each administration will take to meet the shared priorities of the Framework.

The Department of Health and Social Care would like to thank the rare disease community and all stakeholders for their help in developing the Framework.

Published 9 January 2021