Calling all Kiwis with a rare health condition – your voice is needed

Rare Disorders NZ is appealing to every person living with a rare health condition in New Zealand to participate in their biennial survey, which opened today.

The Voice of Rare Disorders Survey is conducted every two years by Rare Disorders NZ to identify gaps in services and care for people living with rare disorders.

“This is the only survey of its kind for understanding the challenges Kiwis with rare disorders face when trying to get their healthcare needs met. The more people who participate, the more complete a picture we get,” says Rare Disorders NZ CE Chris Higgins.

“This population group routinely gets overlooked and underprioritised, yet they have some of the most complex health conditions. The survey results help us hone in on the priority areas the Government urgently needs to invest in,” continues Higgins.

There are estimated to be 300,000 people in New Zealand living with one or more of the over 7,000 known rare disorders. Results from previous surveys show that those affected share many of the same challenges and systemic barriers to accessing the care they need.

“We have consistently seen that our health and social systems are failing those with rare disorders. From delayed diagnosis to poor treatment access, people living with rare disorders continue to face significant inequities in healthcare,” says Higgins.

In July 2024 the Ministry of Health released New Zealand’s first Rare Disorders Strategy, which gave a lot of hope to the rare disorder community that services would be improving. There has, however, been no effort since from health entities to make a plan to implement the Strategy.

“Without implementation, the Strategy is not worth the paper it’s written on. We are perplexed as to why the Government would not want to implement the Strategy with urgency. A system that more efficiently responds to rare disorders would lead to significant savings in the health system,” says Higgins.

“We have spent the past year urging the Government to take interest in prioritising the Strategy. A strong response rate for this survey would further bolster our call, so we urge every Kiwi with a rare health condition to please take a moment to share your journey of living with a rare disorder through our survey.”

The Voice of Rare Disorders Survey is open from 9. September to 31. October 2025 and can be accessed here.