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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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Philippa's story

My mother and I both have rare diseases and have vastly different experiences in dealing with the health system. I was diagnosed with Hydrocephalus in the early 1970s thanks to an observant Plunket nurse. My sister was also diagnosed with Hydrocephlus at birth three years later. My parents were told not to have any more children, and there wasn't any advice or assistance available, so they just g…

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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