RDNZ is the respected voice of rare disorders in New Zealand. We are the only national organisation supporting all New Zealanders who live with a rare condition, and the people who care for them.

Our enquiries line, website and support group networks allow patients to access knowledge quickly. We also offer direct support to link people to information on specific rare diseases and to navigate the health system.

We provide a strong common voice to advocate for health policy and a healthcare system that works for those with rare diseases. To do this, RDNZ works with the Government, researchers, clinicians and industry to promote research, diagnosis, treatment and services.

Rare Disorders NZ Briefing to Incoming Minister of Health 2020

We help find information
We facilitate access to individual support groups.

RDNZ also provides a contact point for families who are affected by genetic conditions so rare that they do not have their own support group.

We help support groups get established
We offer clear guidance and information on starting a new support group, plus connect groups to share their knowledge and expertise. 

We promote awareness
We promote the issues faced by the rare disease community to increase understanding, motivation and empowerment.

We provide a voice
We work with rare disease groups to communicate their concerns to health officials/government to work for fairness within the health service. We also provide a central point for government to communicate with the rare disease community.

We build partnerships
We build rare disease support group networks, and promote partnerships between these groups, clinicians, researchers, government agencies and industry.

We promote research
We promote research to improve the treatment and care of rare disorders, working towards cures.

We educate
We educate physicians and other healthcare professionals about rare diseases to promote early diagnosis and optimal treatment.

In this section

Annual Reports

Annual Report 2017

Annual Report 2018

Annual Report 2019

Annual Report 2020


Advocacy timeline

We advocate for better healthcare for the 300,000 New Zealanders living with a rare disorder and their families.