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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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Samantha's story

In January 2014 I was diagnosed with Pompe after years of back pain, getting weaker and shortness of breath. I first noticed symptoms in 2007, after the birth of my son, it seemed harder for me to get fit again, and subsequently after my daughter in 2009. I used to love running and attending all the Les Mills classes, but over time it became harder and harder to keep up. I put it down to not bei…

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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