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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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Allyson's story

I was diagnosed with Pompe Disease at the age of 46, in July 2010. I had symptoms for many, many years and had been sent from one specialist to another on a frustrating and tiring quest for diagnosis. In 2002 I had a muscle biopsy which gave no answers. In 2004 I had a return visit to that neurologist who said since I hadn't deteriorated in the two years since I had seen him I didn't have muscul…

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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