First Rare Disorders Strategy

The release of New Zealand’s Rare Disorders Strategy marks a significant moment for people living with often debilitating conditions.

Having such a strategy is huge for the rare disorder community, as it means recognition and acknowledgement, says Rare Disorders NZ Board Chair James McGoram.

“It marks the first time we have high level documented intention to improve the health and wellbeing of this vulnerable population group.” For more than 20 years, Rare Disorders NZ, along with many other stakeholders in the rare disorder community, has been calling for an official strategy to direct government entities on how to respond to rare disorder cases.

There are more than 7000 known rare disorders, and while each may only affect a few people in New Zealand, collectively they’re estimated to affect 300,000 people nationally. Until now, the health system has had no directives on how to manage patients presenting with unusual co-presenting symptoms, leaving many patients feeling misunderstood and bounced around in the health system. Almost one in five rare patients reported waiting over 10 years for a diagnosis, according to Rare Disorders NZ. More than half felt communication and information exchange between different service providers was poor, and that professionals are ill-equipped to support them.

“The Strategy is an important first step, but real change will only happen when systemic improvements are implemented, and we will certainly be monitoring this closely,” the group says.