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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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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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Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

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