The purpose of this survey is 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 and support they need.  

This data will be used to inform and educate stakeholders, policy makers and the general public, and to push for meaningful change for the rare disorder community.  

We encourage anyone living with a rare disorder in New Zealand, as well their whānau and carers to participate in this survey.

We’re hoping that responses will represent a cross section of New Zealanders with a rare disorder, and participation is invited from all ages, locations and ethnic groups. We would love to see a higher response rate from Māori in this year's survey, so if you or your whānau identify as Māori please indicate this in the appropriate field. 

Your voice is important and the more responses we get, the stronger our collective voice will be. 

The survey will be open from 18 September until 31 October. 

Thank you in advance for taking the time to participate. If you have any questions, please email 

To take the survey click here.