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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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Denise's story

I was originally diagnosed with LGMD (limb girdle muscular dystrophy) around the age of 18 years. I think my parents had known for some time that there was something not quite right as I did myself, but the process for getting a diagnosis seemed to take quite some time as there was no family history. I remember being told I had a variety of different conditions including SMA (spinal muscular atr…

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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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 150 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.

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