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
Susannah's story
I was diagnosed with Trigeminal Neuralgia (TN) 11 years ago, at the age of 32. At that time my daughter with special needs was 10 and my younger daughter was almost six. I am a solo mum. My GP diagnosed it immediately but she referred me to the maxillofacial surgeon at the hospital for an expert diagnosis. This was a humiliating experience that resulted in a complaint through the Health and D…
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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