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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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Family: Scrutiny and evidence
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) …

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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.

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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 …

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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

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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 …

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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.

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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 …

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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.

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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 (

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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