The value of action- The cost of immobilism

The value of action- The cost of immobilism

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In Belgium- we screen for Spinal Muscular Atrophy for 5 years

https://www.nature.com/articles/s41598-021-99496-2

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In Ukraine- they screen for SMA for nearly two years https://www.thelancet.com/action/showPdf?pii=S0140-6736%2823%2901281-3

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In the UK- we still do not screen! Every five days a child is born with SMA in the UK- every five days we fail to protect this child. It is also a massive and well demonstrated cost for NHS

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10310612/pdf/40120_2023_Article_489.pdf

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Thank you to MP Ben Everitt for hosting today “Navigating the Economical Impact for Neurological Disorders in the UK” in Westminster!! Please mention to your colleagues that each time we lose a single minute waiting for newborn screening in SMA in this country- we lose 240 pounds that could be MUCH better used!

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Ukraine has initiated SMA NBS it in the middle of the war. We should do it IMMEDIATELY !

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