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
Doug's story
I had a good life. I was educated, I had a job, I had a house, and I had a family. My health had been very bizarre and it was getting weirder. I was living in South Africa and they had no idea what was happening to me. My wife sent me back to New Zealand to try and get answers. I had Wolfram Syndrome (WS) otherwise known as DIDMOAD (diabetes insipidus, diabetes mellitus, optic atrophy, and de…
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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