NZORD - the NZ Organisation for Rare Disorders
NZORD - the New Zealand Organisation for Rare Disorders
Yes, it’s five years since the September 2000 inaugural conference that gave the mandate to set up NZORD, and set us on the path of making a difference for those disorders and conditions that usually suffer from being “below the radar screen”. It has been a challenging half-decade but there has been lots of progress made too. We are now well placed to ensure the patient/family voice is heard in health and disability consultations, and continue to develop resources for support groups.
We can't claim all the credit for the report of the Royal Commission, the National Health Committee Review of Genetic Services, the guidelines for Pre-implantation Genetic Diagnosis, the establishment of the Specialist Metabolic Service, and progress towards enhanced Newborn Metabolic Screening and folate fortification of food - but we can be satisfied that our voices were clearly heard, and the decisions so far are closely aligned to our submissions.
Click here for a summary of some of the
key achievements in the past five years, extracted from
our accountability reports to our funders.