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.
Rare News
Rare Stories
Tamara's story
Growing up (from around 5 or 6 years) I had weekly bleeding noses that would last 30 minutes to 2 hours; breathless on any form or exercise, constantly low in iron and suffered chronic fatigue and constipation, and I developed migraines at 17 years of age (all of which are still on going issues). Luckily my bleeding noses were under control after being operated on at the age of 20. I had endome…
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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