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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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Frank's story

I was diagnosed with Waldenstroms Macroglobulinemia in December 2012.  A blood test showed up some issues and more comprehensive tests led to the diagnosis. Following a bone marrow biopsy, treatment was started with Chlorambucil. This did not agree with me at all and was discontinued, to be followed by seven cycles of Rituximab and Fludarabine. Over the following few years the …

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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