"When I was growing up, I didn’t think of myself as being any different to other children until I went to intermediate."

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Our collective campaign for a National Rare Disorder Framework has been gaining momentum and attention.

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Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 160 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

Learn more