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England Rare Diseases Action Plan

The England Rare Diseases Action Plan, led by the Department of Health and Social Care, addresses diagnosis, treatment, and support for patients with rare and neglected diseases including haemophilia, Hansen's Disease, and Alpha-1 Antitrypsin Deficiency. The plan focuses on improving specialist access, research funding allocation, evidence availability, and equity across paediatric and adult services. The policy is active with ongoing parliamentary scrutiny of implementation and funding commitments.

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2026

24 events
29 Apr 2026 | Written question Department of Health and Social Care linked

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 19 December 2025 to Question 99742 on Screening: Babies, whether the research being undertaken to understand delays

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 19 December 2025 to Question 99742 on Screening: Babies, whether the research being undertaken to understand delays in diagnosis will include consideration of (a) …

▤ View document · ↗ GOV.UK
29 Apr 2026 | Written question Department of Health and Social Care linked

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 7 January 2026 to Question 99744, what steps his Department is taking to improve the availability and quality of evi

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 7 January 2026 to Question 99744, what steps his Department is taking to improve the availability and quality of evidence for rare diseases.

▤ View document · ↗ GOV.UK
29 Apr 2026 | Written question Department of Health and Social Care linked

To ask the Secretary of State for Health and Social Care, whether his Department uses international data when assessing evidence for rare diseases; and if he will make an assessment of the potential r

To ask the Secretary of State for Health and Social Care, whether his Department uses international data when assessing evidence for rare diseases; and if he will make an assessment of the potential role of such data in relation to …

▤ View document · ↗ GOV.UK
29 Apr 2026 | Written question Department of Health and Social Care linked

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 7 January 2026 to Question 99741, what evidence the UK National Screening Committee considered in reaching its recom

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 7 January 2026 to Question 99741, what evidence the UK National Screening Committee considered in reaching its recommendation on screening for metachromatic leukodystrophy

▤ View document · ↗ GOV.UK
29 Apr 2026 | Written question Department of Health and Social Care linked

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 7 January 2026 to Question 99743, whether his Department has met with ArchAngel MLD Trust, the MPS Society, MLD Supp

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 7 January 2026 to Question 99743, whether his Department has met with ArchAngel MLD Trust, the MPS Society, MLD Support UK and the Newborn …

▤ View document · ↗ GOV.UK
29 Apr 2026 | Written question Department of Health and Social Care linked

To ask the Secretary of State for Health and Social Care, whether his Department has issued guidance to the UK National Screening Committee on taking proactive steps to consider adding new conditions

To ask the Secretary of State for Health and Social Care, whether his Department has issued guidance to the UK National Screening Committee on taking proactive steps to consider adding new conditions to the newborn screening programme.

▤ View document · ↗ GOV.UK
29 Apr 2026 | Written question Department of Health and Social Care linked

To ask the Secretary of State for Health and Social Care, how many children have been diagnosed with metachromatic leukodystrophy since 2022; how many of those were diagnosed in time to receive NHS-co

To ask the Secretary of State for Health and Social Care, how many children have been diagnosed with metachromatic leukodystrophy since 2022; how many of those were diagnosed in time to receive NHS-commissioned treatment; and whether he has made an …

▤ View document · ↗ GOV.UK
29 Apr 2026 | Written question Department of Health and Social Care linked

To ask His Majesty's Government what steps they are taking to ensure that advanced therapy medicinal product clinical trials in the United Kingdom reflect the diversity of patient populations who migh

To ask His Majesty's Government what steps they are taking to ensure that advanced therapy medicinal product clinical trials in the United Kingdom reflect the diversity of patient populations who might benefit from those treatments.

▤ View document · ↗ GOV.UK
28 Apr 2026 | Written question Department of Health and Social Care linked

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that all paediatric departments have access to specialists trained in the diagnosis and treatmen

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure that all paediatric departments have access to specialists trained in the diagnosis and treatment of Paediatric Acute-onset Neuropsychiatric Syndrome (

▤ View document · ↗ GOV.UK
27 Apr 2026 | Written question Department of Health and Social Care linked

To ask the Secretary of State for Health and Social Care, how many cases of Hansen's Disease have been diagnosed in the last ten years; and what steps his Department is taking to support people infect

To ask the Secretary of State for Health and Social Care, how many cases of Hansen's Disease have been diagnosed in the last ten years; and what steps his Department is taking to support people infected by this disease.

▤ View document · ↗ GOV.UK
2 Mar 2026 | Announcement Department of Health and Social Care linked

England Rare Diseases Action Plan 2026

UIN: HCWS1372 The government has published England’s fifth Rare Diseases Action Plan on GOV.UK on 27th February, ahead of international Rare Disease Day on the 28th. This government remains committed to improving the lives of people living with rare diseases, …

▤ View document · ↗ GOV.UK · ↓
2 Mar 2026 | Announcement Department of Health and Social Care linked

England Rare Diseases Action Plan 2026

UIN: HLWS1375 My Honourable Friend the Parliamentary Under-Secretary of State for Public Health and Prevention (Ashley Dalton MP) has made the following statement:The government has published England’s fifth Rare Diseases Action Plan on GOV.UK on 27th February, ahead o...

▤ View document · ↗ GOV.UK · ↓

2025

6 events
3 Mar 2025 | Announcement Department of Health and Social Care linked

England Rare Diseases Action Plan 2025

UIN: HCWS489 The government has published England’s fourth Rare Diseases Action Plan on Gov.UK today, on international Rare Disease Day. This government remains committed to improving the lives of people living with rare diseases, and today’s action plan provides more...

▤ View document · ↗ GOV.UK · ↓
3 Mar 2025 | Announcement Department of Health and Social Care linked

England Rare Diseases Action Plan 2025

UIN: HLWS482 My hon. Friend the Parliamentary Under-Secretary of State for Public Health and Prevention (Ashley Dalton MP) made the following Statement today:The government has published England’s fourth Rare Diseases Action Plan on Gov.UK today, on international Rare...

▤ View document · ↗ GOV.UK · ↓

2024

7 events
11 Mar 2024 | Announcement Department of Health and Social Care linked

Hereditary Tyrosinemia Type 1

UIN: HCWS328 I would like to inform the House that I have accepted the UK National Screening Committee’s recommendation to introduce a new condition Tyrosinemia type 1 to the New-born Bloodspot Screening Programme in England. Hereditary Tyrosinemia type 1 is …

▤ View document · ↗ GOV.UK · ↓
11 Mar 2024 | Announcement Department of Health and Social Care linked

Hereditary Tyrosinemia Type 1

UIN: HLWS325 My Rt Hon Friend the Minister of State (Minister for Health and Secondary Care) (Andrew Stephenson) has made the the following Written Statement: I would like to inform the House that I have accepted the UK National Screening …

▤ View document · ↗ GOV.UK · ↓
29 Feb 2024 | Announcement Department of Health and Social Care linked

England Rare Diseases Action Plan 2024

UIN: HCWS298 The government has published England’s third Rare Diseases Action Plan on GOV.UK today, on international Rare Disease Day.Rare diseases are those affecting less than 1 in 2000 in the population. Although rare diseases are individually rare, they are …

▤ View document · ↗ GOV.UK · ↓
29 Feb 2024 | Announcement Department of Health and Social Care linked

England Rare Diseases Action Plan 2024

UIN: HLWS293 My Hon. Friend Minister of State (Minister for Health and Secondary Care) (Andrew Stephenson) has made the the following Written Statement:The government has published England’s third Rare Diseases Action Plan on GOV.UK today, on international Rare Diseas...

▤ View document · ↗ GOV.UK · ↓

2023

6 events
28 Feb 2023 | Announcement Department of Health and Social Care linked

England Rare Diseases Action Plan 2023

UIN: HCWS586 The Government has published England’s second Rare Diseases Action Plan today, on international Rare Disease Day.Approximately 3.5 million people in the UK are living with one of over 7,000 rare diseases, such as muscular dystrophies or Huntington’s disea...

▤ View document · ↗ GOV.UK
28 Feb 2023 | Announcement Department of Health and Social Care linked

England Rare Diseases Action Plan 2023

UIN: HLWS577 My Hon Friend the Minister of State (Minister for Social Care) (Helen Whately) has made the following written statement:The Government has published England’s second Rare Diseases Action Plan today, on international Rare Disease Day.Approximately 3.5 mill...

▤ View document · ↗ GOV.UK
24 Jan 2023 | Announcement Department of Health and Social Care linked

Government Action on Major Conditions and Diseases

UIN: HLWS506 My Rt Hon Friend the Secretary of State for Health and Social Care (Steve Barclay) has made the following written statement:As this House is aware, the health and social care system faces long-term challenges to ensure the public …

▤ View document · ↗ GOV.UK

2022

4 events
28 Feb 2022 | Announcement Department of Health and Social Care linked

England Rare Diseases Action Plan

UIN: HCWS644 The Government has published the first England Rare Diseases Action Plan today – on international Rare Disease Day.This Action Plan is part of our continued commitment to improve the lives of those living with rare conditions, such as …

▤ View document · ↗ GOV.UK
28 Feb 2022 | Announcement Department of Health and Social Care linked

England Rare Diseases Action Plan

UIN: HLWS628 My Hon Friend the Parliamentary Under Secretary of State (Minister for Patient Safety and Primary Care) (Maria Caulfield) has made the following Written Statement:The Government has published the first England Rare Diseases Action Plan today – on internat...

▤ View document · ↗ GOV.UK

2021

2 events

2020

1 event

2019

1 event

2018

1 event