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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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Jayne's story

In 2011, I was diagnosed with cervical and hand dystonia, but really have had problems since I was a child with fatigue, sore neck and mobility. It was a relief to be told I had something, as over the years there have been a variety of medical investigations; GP, psychological, gynaecological, physiotherapy, orthopaedic to mention a few. It is also a relief that there is a support 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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