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Raising the rare voice

We are the collective 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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Michelle's story

I started fading young. Fresh into puberty. Not in the poetic sense — no delicate drifting into dreamland. Just... disappearing. Mentally checked out. Physically present. Eyes open, brain offline. A kid who couldn’t keep up, couldn’t stay tuned in, always half a step out of sync. Life was already hard, and the reasons were real. Poverty, stress, generational trauma, teenag…

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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