Commons Sense

House of Commons · Written Ministerial Statement

England Rare Diseases Action Plan 2024

29 February 2024 · Department of Health and Social Care

Proposed by Andrew Stephenson Con Pendle

NHS

Summarised by AI from the official record, so it can contain mistakes.

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At a glance

Key points

  • The government has published England's third Rare Diseases Action Plan on international Rare Disease Day in 2024.
  • The plan includes 7 new commitments to address priorities such as faster diagnosis and better quality of care.
  • Annual progress reports will be issued over the next five years starting in 2025.

Issue summary

The government has published England’s third Rare Diseases Action Plan on international Rare Disease Day.

Action requested

This plan updates progress made against previous actions and sets out 7 new commitments to address the priorities of faster diagnosis, increased awareness among healthcare professionals, better quality of care, and improved access to specialist care, treatment, and drugs. Progress will be reported annually over the next five years starting in 2025.

Key facts

  • Rare diseases affect less than 1 in 2000 people but collectively impact 1 in 17 people at some point in their lifetime.
  • Approximately 3.5 million people in the UK are living with one of over 7,000 rare diseases.
  • The National Conversation on Rare Diseases received nearly 6,300 responses.
  • Four priorities from the 2021 UK Rare Diseases Framework include faster diagnosis, increased awareness among healthcare professionals, better quality of care and improved access to specialist care, treatment and drugs.
  • The Action Plan includes significant new commitments against the Framework priorities.
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