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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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Lizzie's story

My daughter Lizzie was born in 2003 in Rotorua. She was a full-term baby delivered by emergency c-section. Initially she seemed well. She was a good weight with good Apgar scores, she latched well and seemed peaceful. By day two, however, Lizzie began to fret and struggle. She would not feed and could not settle. She was admitted to SCBU and given oxygen but her condition worsened. Later that da…

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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