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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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Prerna's story

I woke up at around 8am on 4 September 2020 and noticed my entire body was covered in rashes. It wasn’t painful but it felt very itchy. I used an oil and the rashes were gone in a couple of hours. I went to see my GP later that day and they advised that it was probably allergies. The following couple of days were pretty normal. I woke up on 7 September and when I was getting out of bed, I felt ve…

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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