Charities Commission Registration CC22512

• To support and improve the level of organisation and information among patients and families affected by rare disorders.
• To promote 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.
• To build partnerships of patients/families, clinicians, researchers, government and industry, that accelerate the research effort towards control and cure of rare disorders.

NZORD's 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.
• Improving patient/family, clinician, researcher and industry collaboration.