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
Heath's story
From four weeks old we begged for help with Heath. His legs never moved, we knew something was seriously wrong. Over the course of 10 months we went through three GP practices trying to find someone, anyone to listen. I eventually refused to leave without a referral to a paediatrician. Two weeks later we were finally seen in the hospital. We were told Heath would be sent for an MRI and blood …
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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