Ultra-expensive medicine a desperate need for thousands of babies around the world

 many of parents of children with Spinal Muscular Atrophy (SMA), a rare motor neuron disease. Between one in 6,000 and 10,000 children born have the disorder in some form. More than two-thirds of diagnosed with the most common and serious derivation, SMA1, die before the age of 2, if left untreated — and treatment is complex. A new miracle gene therapy called Zolgensma is the most expensive medicine in the world. 

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