Our mission

To achieve the earliest possible introduction of newborn screening for SMA in the UK which will deliver the best outcomes from treatment and reduce future healthcare costs.


“Every five days in the UK, a baby is born with Spinal Muscular Atrophy (SMA). SMA is a rare and devastating genetic condition. Without treatment, it is a leading genetic cause of infant death.

Earlier treatment (before symptom onset) is critical for babies’ outcomes and newborn screening is the fastest route to a diagnosis of SMA.

Many European countries already have newborn screening (NBS) for SMA, but the UK is not currently one of them.

It is unethical to delay the introduction of SMA newborn screening to the UK, now we have a test that works, and treatments that can transform the lives of children and their families.

For every five days that a decision is delayed, a baby born with SMA could be denied the chance of a healthier future.”

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What the Alliance is doing now

Clinicians, patient groups and stakeholders are determined to ensure that all newborns in the UK are screened for SMA.

The work of the Alliance has been partly funded by independent donations from Novartis Gene Therapies and Roche Products Ltd. Our thanks to both for their generous support. Neither Novartis Gene Therapies nor Roche Products Ltd have had editorial influence over the content of this website.