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
Adam's story
My son was born in August 2006. It was my first (and only) pregnancy and was uneventful. I was very excited to become a mum. Adam was born two weeks before his due date and it was a short labour. From the time he entered the world, and without realising it, we had already started taking steps on a journey we were unprepared for. The midwife was quite surprised as Adam was very small (2.27kg).…
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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