Would you like to play a part in highlighting the barriers within the current health system for people living with rare disorders? Complete this survey and share your experiences.

Let the collective voice be heard in this survey so we can show the Ministry of Health and the Government where the barriers are within the current health services, and advocate for changes to make a real difference.

This survey is open to anyone who is living with a rare disorder in NZ, as well as their family members and carers. Your responses will help to provide insight into the unmet treatment needs of people who are living with a rare disorder in this country. Please forward this link to as many of your contacts in the rare disorder community as possible. 

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Thanks in advance for your support and participation – the more people who respond and share their experiences, the more powerful our voice will be!

Survey link

Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 150 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

Learn more