Policy paper

England Rare Diseases Action Plan 2024

The third action plan setting out how the Department of Health and Social Care and delivery partners will implement the UK Rare Diseases Framework in England.

Applies to England



The UK government and devolved administrations published the UK Rare Diseases Framework in January 2021, setting out a shared vision for addressing health inequalities and improving the lives of people living with rare diseases across the UK.

The framework outlined 4 key national priorities:

  • helping patients get a final diagnosis faster
  • increasing awareness among healthcare professionals
  • better co-ordination of care
  • improving access to specialist care, treatment and drugs

To turn this vision into action, each of the 4 UK nations has committed to developing nation-specific action plans detailing how these priorities will be addressed.

This is England’s third Rare Diseases Action Plan, following our commitment to publish action plans annually during the lifetime of the UK Rare Diseases Framework. This action plan has been developed in close collaboration with delivery partners across the health system and the rare disease community. The 2024 England Rare Diseases Action Plan will report on progress against our existing 29 actions as well as introducing 7 new actions to improve the lives of people with rare diseases for the year ahead.

Published 29 February 2024
Last updated 14 May 2024 + show all updates
  1. Updated the annexes document to correct the status of 'Action 26: registration of national data for exemplar rare genetic conditions which cause an inherited predisposition to cancer' from 'concluded' to 'ongoing'.

  2. First published.