What we do

NZORD 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 offer direct support to link people up to information on their specific rare disease 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, NZORD works with the Government, researchers, clinicians and industry to promote research, diagnosis, treatment and services.

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

NZORD 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 host and manage 40 websites for small support groups.

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.

Vayla