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Raising the rare voice

We are the respected voice for rare disorders in New Zealand.  We advocate for an equitable healthcare system that works for the 300,000 Kiwis with a rare condition. 

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Elizabeth's story

I would like to dedicate this testimony to my late brother Graeme, without whose diagnosis we might never had known we had Fabry disease. On my journey I have discovered that it is not merely physical isolation but also the psychological isolation when your disease is so rare that your doctor must ask you to wait while he googles it. There is also self-imposed isolation that comes with denial…

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 160 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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