NZORD Education Session – 26 February 2019
NZORD is running a free Education Session for the chance to meet, talk and share with others living with rare disorders. This will be a morning meeting in Wellington with two speakers and a workshop dedicated to addressing some of the challenges faced by those with rare disorders to help in creating a vision for navigating your own complex health journey. The workshop will also offer skills of resilience and being an advocate warrior for yourself or your loved one.
February 2018 – New Horizons: The New Zealand Rare Disease Day Symposium
NZORD hosted a one-day symposium for Rare Disease Day 2018 on 22 February in Auckland. The aim was to bring together clinicians and people living with rare disorders to share information and experiences – enabling clinicians, researchers and patients to work together for the best health gains.
August 2013 – Orphan Drug Access Seminar
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 – Rare Disease Day Workshop
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.
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.
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 – Partnerships for Progress
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 – New Zealand Organisation for Rare Disorders established
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.