Review the evidence and fund the addition of SMA to the Newborn Screening Test

Summary

We urge the UK Government to fund and help fast-track the process to add SMA to the NHS newborn heel-prick test. SMA is a rare genetic condition with devastating consequences if not treated early. Every baby should be screened at birth to allow early diagnosis and access to life-changing treatment. SMA was one of the leading genetic causes of infant mortality: up to 90% of untreated babies either died before age two or required permanent ventilation. It is now treatable, but treatment is most effective before symptoms appear. Early diagnosis can give babies the chance at a life without severe disability. Without screening, many babies are diagnosed too late. The damage already caused to their mobility, breathing and swallowing cannot be reversed. Scotland has committed to piloting SMA newborn screening this year. All babies should have the same chance. No child should suffer avoidable harm.

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