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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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Chris' story

I have rare health conditions named vascular Ehlers-Danlos syndrome and cerebral cavernous haemangiomata. I also have fibromuscular dysplasia as well. Symptoms-wise I bruise very easily and never heal properly from wounds, plus I have thin translucent skin. Spontaneous pneumothoraxes (collapsed lungs) are very common too of which I've had about six in the past, as well as a renal artery disse…

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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