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
Malany's story
Phenylketonuria (PKU) is a rare metabolic disease that is picked up at birth. If you have a child and can remember the heel prick test that is completed within a few days of giving birth - one of the things the test checks for is what I have! If not picked up at birth and treatment then started, PKU can cause severe mental disability. Normal milestones won't be reached, and the brain damage can …
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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