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Raising the rare voice

We are the collective 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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Jessica's story

Neuro Sarcoidosis was a surprise diagnosis after a long time of treating my symptoms as perimenopause.In my mid forties it’s not a big surprise we were focussing on perimenopause for all the weird, progressive and positively strange symptoms I was dealing with.From dizziness, eyesight worsening, brain fog, language fading and general overwhelming fatigue. My GP was helping me with HRT and anythin…

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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