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(09) 414 5360

New Zealand Organisation for Rare Disorders (NZORD)

Ph: 04 385 1119

Email: enquiries@nzord.org.nz

Website: www.nzord.org.nz

NZORD, the New Zealand Organisation for Rare Disorders, provides New Zealand's central starting point for information about rare diseases.

Our mission

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.

How we can help

There are a number of ways NZORD can help you.  Listed below are the services we provide, if you have any further questions, please contact us.

We help you find information

Some patients and families affected by rare disorders have used the Internet to find within days, what others have only been able to glean over decades. This web site and our support group network offer channels through which more people can access this knowledge quickly. Our directory is used by clinicians to provide their patients with links to support groups. Better informed patients and families leads to better access to clinical care and disability support and can enhance opportunities for participation in research.

We help groups get established

Advice is available on incorporation and charitable status. We provide a free listing in our directory of support groups, plus free websites for rare disease groups to communicate with their members, and to link to overseas groups for the same condition.

We promote research

NZORD believes that increasing knowledge of the human genome, and advances in medical science offer great opportunities to improve the health of those affected by rare disorders. They can come out of the "too few - too small - too hard - too bad" basket and have their day in the sun. We promote research efforts to improve the care and treatment of rare disorders, and to work towards cures.

We provide a voice

Understanding the needs of people and families affected by a rare disease, we provide a voice to advocate for and help guide decisions in areas such as the need to improve screening and diagnosis, upgrade the clinical expertise available to treat rare conditions, drug funding priorities, and use of new technologies.

We build partnerships

As we build the rare disease support group network, we are also promoting partnerships between support groups, clinicians, researchers, government agencies and industry. The dynamics of these partnerships contribute to better information and care, new opportunities for research, and better understanding of the needs and interests of the patients and families.

Thank you to our
Major Donors