If you or a family member has a rare disorder, please fill out this survey.

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 2021.

As the Ministry of Health does not collect comprehensive rare disorder data, Rare Disorders NZ have taken it upon themselves to fill this vital data gap in the health system.

Rare Disorders NZ strongly encourages anyone living with a rare disorder in New Zealand, as well their whānau and carers, to participate in this survey. Your voice is important, and the more responses we get, the stronger our collective voice will be.

The survey will be open from 3 November 2021 until 1 December 2021. It takes 20-25 mins to complete.

Take the Rare Disorders Survey.