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 and idiopathic disorders.

NB You must have a confirmed diagnosis to participate. While we recognise the difficulty in getting a diagnosis for a rare disorder and that many people living with an undiagnosed condition will have a rare disorder, unfortunately the survey cannot capture those without a definitive diagnosis. Until a diagnosis is confirmed we cannot be sure the condition is 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.

Share the survey with your networks

We want the voice of every New Zealander living with a rare disorder represented in the survey results. Help us reach far and wide by sharing the survey in newsletters, on social media and in your communities.

Downloadable resources below. Thank you for your support!

Social media tiles

Suggested captions:

Rare Disorders NZ's biennial Voice of Rare Disorders is now open. If you, or someone you care for, lives with a rare disorder, this survey is for YOU! Help shape a better future for the rare disorder community by taking the survey today.

The Voice of Rare Disorders Survey is now open and Rare Disorders NZ needs YOUR voice more than ever. Please take a moment to complete the survey and help strengthen the collective voice for rare.

Printable A4 posters

Download and print these posters to put up on notice boards around your community.