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
James' story
James was a delightful Wellington toddler when his family were told that he had a rare disorder. In fact, so rare that there was no formal diagnosis. James was three years old when he began to lose his ability walk, his eating caused choking episodes and he was incredibly tired yet couldn't sleep. His legs caused him nerve pain and his eyes would lose focus. James's body was fighting a rare dis…
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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