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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Rare Stories
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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