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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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Roger's story

I have a rare disorder called Radioulna Synostosis. None of my family have this disorder and I have had it since birth. Radioulna Synostosis is a rare condition where there is an abnormal connection between the radius and ulna bones of the forearm. It was first described in 1793 and since then there have been just over 400 cases reported. Around 60% of people with Radioulna Synostosis have bo…

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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