A call for greater support for children living with rare disorders
A call for greater support for children living with rare disorders
4 July 2022
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.
© 2024 Newstalk ZB, NZCity