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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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Sarah's story

My life changed forever when I was 15 years old and developed a rare neurological disorder called idiopathic intracranial hypertension (IIH). Everything I’d ever known was ripped to shreds as my body battled with the effects of high cerebrospinal fluid pressure on my brain. This caused severe, relentless headaches, nausea, neck and body pain, and issues with balance/co-ordination/cognition - al…

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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