Policy paper

England Rare Diseases Action Plan 2022

The first 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


England Rare Diseases Action Plan 2022

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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 first Rare Diseases Action Plan, developed together with delivery partners across the health system and in close consultation with the rare disease community. It sets out specific, measurable actions for the next year under each of the 4 priority areas, including the outcomes that we aim to achieve.

The second England Rare Diseases Action Plan will be published at the start of 2023 and will report on progress against the actions set out here, as well as proposing updated and new actions.

Action plans will be published annually during the lifetime of the UK Rare Diseases Framework.

Published 28 February 2022
Last updated 28 February 2022 + show all updates
  1. Published fully accessible HTML version of the plan.

  2. First published.