Contact Us

New Zealand Organisation for Rare Disorders

PO Box 38-538,

Wellington Mail Centre

Phone: +64 4 471 2226


Charities Commission Registration CC22512


If you or someone you love has just been diagnosed recently with a rare disorder, or if tests are underway, then you probably have lots of questions and may not know quite where to start… That's an experience many of us had anyway, and we've collected this information to address the sorts of questions we had when starting out on our own journeys.

This introductory guide is written by family members for family members.