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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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Debbie's story

I have had CRPS for almost 10 years now. C.R.P.S or CRPS is a neurological chronic pain condition. Our injuries heal, but our brain keeps sending out constant pain signals, our central nervous system malfunctions and even our autonomic system begins to misfire. The first hurdle we often come up against is being told our injury has healed - and there is nothing wrong with us anymore. D…

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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