Fund the addition of Krabbe disease in the newborn blood spot programme

Background

We ask the UK Government to assess Krabbe disease for inclusion in the NHS newborn blood spot screening programme, so babies at risk can be identified before symptoms develop and families can access early treatment and specialist care where appropriate.

Additional details

Krabbe disease is a rare inherited neurological disorder that can cause devastating illness in babies who may initially appear healthy. We believe there is an urgent need for earlier diagnosis. We believe Krabbe disease should be formally assessed for inclusion in newborn blood spot screening, so the UK can determine whether babies could benefit from earlier identification and treatment.

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