Our Voice Of Rare Disorders Survey 2023 Is Now Open – Please Share!

It’s time for Rare Disorders NZ’s biannual survey on living with a rare disorder in Aotearoa New Zealand!

Currently, no comprehensive data is collected on rare disorders in New Zealand, which is why our biannual surveys are so vital to fill the current data gaps.

Through this survey we hope to collect much needed data on what it means to live with a rare disorder in New Zealand in 2023 and what barriers people continue to face within the health and social systems to access the care they need.

This data will be used to inform and educate stakeholders and policy makers and to continue to push for meaningful change for people living with a rare disorder.

It is crucial to the success of our survey to have as many respondents from the rare disorder community as possible. We therefore kindly ask that you share this information with your networks and anyone you have contact with in the rare disorder community and encourage them to participate as well.

This survey is open to anyone who is living with a rare disorder in New Zealand, as well their whānau and carers. The survey will close on October 31st.

You can find the survey here.

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