Rare Disorders NZ are undertaking a biannual survey. The aim is to collect data on what it means to live with a rare disorder in New Zealand in 2023. The survey also aims to find out what barriers people continue to face within the health and social systems to access the care is needed.
This data will be used to inform and educate stakeholders and policy makers and to continue to advocate for meaningful change for people living with a rare disorder.
This survey is open to anyone who is living with a rare disorder in New Zealand, as well their whānau and carers.
Find out more and answer the Voice of rare disorders survey.