Raising the rare voice
We are the respected voice for rare disorders in New Zealand.
We advocate for access to world class and world leading health, disability, education and other services for the 300,000 New Zealanders living with a rare disorder.
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Rare Stories
William's story
My beautiful son William was born at 33 weeks. He was diagnosed with reflux at two. He had a tough start with bugs all the time, bowel issues and other bits. He was then diagnosed with Global Development Delay (GDD) at three and a half after fighting to get any support anywhere. Once he was diagnosed with GDD and the report sent to the public hospital, they finally accepted his referral and he w…
Meet some of the 300,000 people living with a rare disorder in New Zealand. If you would like to share your personal story tell us here.
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