The 2025 Voice of Rare Disorders Survey

Do you, or does someone you care for, live with a rare health condition? We want to hear from you!

The Voice of Rare Disorders Survey is now open, and we want every New Zealander living with a rare disorder to participate.

This survey is to collect much needed data on what it means to live with a rare disorder in New Zealand in 2025.

We want to know the challenges and barriers people living with a rare disorder face within the health and social systems to access the care and support they need.

Who can take the survey?

You are invited to participate in this survey if you are living with a rare disorder in Aotearoa New Zealand, or you are the primary carer. The questions refer to the person living with the rare disorder.

A disorder is considered rare when it affects fewer than or equal to 1 in 2,000 people.

Rare disorders include, but are not limited to, genetic disorders, cancers, infectious disorders, poisonings, immune-related disorders, idiopathic disorders, and undetermined conditions that are rare.

Start survey

Your responses will help shape a better future for the rare disorder community.

The survey will be open from 9. September until 31. October 2025.

Thank you for taking the time to participate.