New Zealand Organisation for Rare Disorders
PO Box 38-538,
Wellington Mail Centre
Phone: +64 4 471 2226
Charities Commission Registration CC22512
NZORD runs conferences and seminars from time to time to bring together support groups, professionals, researchers and officials, to discuss ways we can make progress in improving knowledge of the causes of rare disorders and develop options to prevent rare disorders or treat and care for those affected by them.
Our conferences include discussions on how systems can be improved to accelerate improvements to detection, treatment, prevention and care. The themes we identify help us plan our work for the years ahead and help clarify aspects of the changes we seek in research priorities and in health and disability support services.
Follow these links for reports on the NZORD conferences and workshops held so far:
August 2013. NZORD held a full day seminar, titled: “Abandoned? Rare disease, specialised medicines and the politics of access”. There was expert analysis and discussion considering the ethical, economic, medical, scientific, political and personal dimensions of the current lack of access to specialised medicines in New Zealand. The highlight of the day was a very welcome promise by several political parties to introduce an Orphan Drugs Access programme for NZ.
February 2013. On Rare Disease Day, NZORD held a workshop in Wellington that was focused on the challenges around access to orphan drugs in New Zealand. Multiple rare disease groups were represented, as well as legal and academic viewpoints.
November 2009. In November NZORD held a smaller, more focused one-day workshop on the development of clinical networks as a way to improve service access and clinical care delivery for those with rare disorders. An invited group of 30 attendees, with about 50/50 representation of rare disease support groups, and those involved in planning and delivering clinical services, met in Wellington to discuss the issues.
November 2007. This conference included a celebration of innovative research being developed and applied here in New Zealand. The NZORD report presented our achievements in past years and the challenges we face in the future. The whole of the second day of the conference focussed on new possibilities in newborn screening, explored technical and ethical issues, discussed how decisions are made about new screening options, and what we need to do to influence the criteria and the decisions.
May 2004. The conference theme Partnerships for Progress was about families and support groups working in partnership with clinicians and researchers: to make progress in understanding, treating and controlling the incidence of rare disorders; sharing knowledge to create "expert” patients and families; and meeting the challenges of biotechnology, genetics and ethics.
September 2000. This inaugural conference led to the formal incorporation of NZORD nine months later in June 2001. This report covers the conference and NZORD’s establishment as a Charitable Trust.