To support, assist and promote better health care and well-being for patients and their families/whānau living with a rare disorder in New Zealand.
NZORD is a registered charitable trust (Charities Commission registration CC22512) that was set up in September 2000.
NZORD welcomes the full extended (patients, family, friends, clinicians and researchers) rare disease community as well as the common disease community by providing support, resources, advocacy and engaging in policy matters that affect the health of all New Zealanders.
The NZORD website offers a central starting point for patients and families affected by rare disorders, and helps families and patients to find essential information as they journey through the health and disability system.
Information is one of the best resources a newly diagnosed patient and their family can be given access to. Being diagnosed with a rare disease can be isolating and it is hard to know where to turn after the initial diagnosis.
One of NZORD’s priorities is to maintain and improve the information we offer to anyone seeking information about rare disorders, and assisting those patients and their families to find support.
Much of the information contained in this website is based on the needs experienced by families embarking on a journey that may be similar to your own, or a close family member or a friend.
What we do
NZORD offers a central starting point for patients and families affected by rare disorders, and helps families and patients find the essential information and support groups they require.
NZORD operates on a national level and provides mostly “online” information resources for people with rare disorders and their families. NZORD provides direct support to assist small groups to operate effectively by providing:
NZORD works with rare disease groups and ensures their concerns and interests are communicated to health officials during consultation processes, this ensures that collectively our rare voices can be heard.