New Zealand Organisation for Rare Disorders (NZORD)

NZORD’s mission is to support and improve the level of organisation and information among patients and families affected by rare disorders while promoting research and education that will identify rare disorders early and ensure the best clinical care for the patient and best social support for the family.

They wish to build partnerships of patients/families, clinicians, researchers, government and industry, that accelerate the research effort towards control and cure of rare disorders. Their priorities include:

Support Group development

Informing more people of the benefits of support group organisation, and assisting them develop their networks.

Helping groups network with international groups for similar diseases, for improved information flows and research opportunities.

Clinical care improvement

Expanded application of newborn screening programmes.

Improvements to diagnosis and management of rare disorders.

Better continuity of care in transition from paediatrics to adult health care services, for those with complex and chronic disorders.

Improved practitioner training in genetics and genetic counselling.

Public education

Public education programmes in genetics and rare disease information.

Improved public access to information on health, disability, and rare disorders.

More public information on biotechnology, research and future trends in health treatment.

Research promotion

Increased investment in basic science and rare disease research.

Specific commitments to targeted research into rare disease with NZ connections, especially those involving NZ populations; and

Improving patient/family, clinician, researcher and industry collaboration.