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6 Jul 2025 12:39
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  •   Home > News > Health & Safety

    A call for greater support for children living with rare disorders

    A call for greater support for children living with rare disorders


    Kiwi kids make up half of 300-thousand New Zealanders who have a rare disease including Spinal Muscular Atrophy.

    Up to 24 percent of children living with SMA are absent from school more than 30 days a year, with 13 percent missing more than 60 days.

    Patient advocate Fiona Tolich says these kids face a life of extreme mental and physical hardship.

    She says many children with SMA require specialised equipment to stay upright.

    © 2025 Newstalk ZB, NZCity

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