RDNZ 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 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.

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 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

Annual Report 2021

 

Advocacy timeline

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