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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Rare Disorders NZ

PO Box 14-313,
Kilbirnie, Wellington 6241, NZ


+64 4 385 1119

Email Address

[email protected]


Rare Disorders NZ is the respected voice of rare disorders in New Zealand, and is the only national organisation supporting all New Zealanders who live with a rare condition, and the people who care for them. RDNZ offers a platform and connector hub to link people to information and rare disorder support groups specific to their disorder, and helps people navigate the health system. RDNZ provides a strong, unified voice to advocate for public health policy and a future healthcare system that works for those with rare disorders. We work with the Government, clinicians, researchers and industry to promote diagnosis, treatment, services and research. RDNZ continues to advocate for a national framework for rare disorders in New Zealand.

Please Note

The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.