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.
Rare News
Rare Stories
Olivia's story
Olivia’s mum and dad were first aware that things weren’t going smoothly when Olivia was six weeks old, and not gaining as much weight as expected with a newborn baby. The first two years of Olivia’s life were spent searching for a diagnosis, including a vast array of tests. Olivia has never been formally diagnosed with a specific condition, though her parents were told that that she may neve…
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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