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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Stephen's story
I have MSA-C, a rare neurological condition that came on in my early 60s, primarily caused in my case by the shrinking of my cerebellum, although there is a more common form (but still rare, 1-3 in 100,000 people) which looks a bit like Parkinson’s Disease. MSA stands for Multiple Systems Atrophy as, like many neurological conditions, it is degenerative (in my case the cerebellum, which control…
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