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
Bernadette's story
When your child has a rare syndrome, life can get very complicated and lonely. My journey began before my daughter was born. A routine scan showed that she had multiple organ deformities that meant she was deemed as incompatible with life. The normal conversation that follows such announcements can be delicately couched in such terms as ‘medical intervention’ and it slowly dawns on you that they…
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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