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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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Steve's story

I have always been an active person, working full time, enjoyed running long distance, sailing, biking and volunteer work in aviation and search and rescue. Coming to a grinding halt with a debilitating rare disease was not on the radar.I ran my last half marathon on 15 March 2020. I developed a light cough during the race and was a little more tired than usual. I completed the race in 2 hours 14…

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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