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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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Kathy's story

I have inclusion body myositis (IBM). This is a degenerative disease of unknown origin that affects between 5-50 per million. It causes loss of skeletal muscles as your immune system interferes with the normal process of muscle cell turnover leading to gradual muscle loss and increasing weakness. There is no definitive understanding of the underlying disease process. There is no drug treatment …

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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