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
Frank's story
I was diagnosed with Waldenstroms Macroglobulinemia in December 2012. A blood test showed up some issues and more comprehensive tests led to the diagnosis. Following a bone marrow biopsy, treatment was started with Chlorambucil. This did not agree with me at all and was discontinued, to be followed by seven cycles of Rituximab and Fludarabine. Over the following few years the …
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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