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Petition Fund newborn screening for spinal muscular atrophy immediately

Every five days in the UK, a baby is born with spinal muscular atrophy (SMA), a severe muscle disease which, if untreated, can lead to complex disability and, at its most severe, death. If treatments available now are delivered at birth, these children have the best chance of long and healthy lives.

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Several countries already have newborn screening (NBS) for SMA. A baby born in the US, will be screened for SMA, and can receive treatment if necessary. In the UK a baby is only tested for SMA after he/she presents symptoms, which are currently irreversible, or if a relative has typical symptoms of SMA. This inequality in life chances is not acceptable. Screening for SMA is safe, cost-effective, and extremely efficient. It could save lives and public money. For every 5 days that a decision is delayed, a baby with SMA could lose the chance of a brighter future.

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