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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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Danielle's story

"When you have a rare disease, you face two battles: one is the illness itself, and the other is living in a world where so few people know what you're up against." I always prided myself on being unique for not following the crowd and marching to my own beat in life, but I would never have thought of myself as being 1 in a million. Yet, my diagnosis at the end of 2020 made me 1 in a million. …

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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