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.