Rare is Everywhere. 300,000 people in New Zealand have a rare disorder and their lives are diverse, inspirational and humbling.

We recognise the power of personal stories and how they bring to light the reality of living with a rare disorder.

Meet some of the Kiwis living with a rare disorder and read their stories here.

Sharing your personal story will help others going through a similar experience, and help educate the wider public about your condition.

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Rare News

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, and we work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

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