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Published 30 November 2023

your voice matters imageThis year Rare Disorders New Zealand have created a survey to help this unique organisation share what it's like living with a rare disorder in Aotearoa. 

The information from the survey will be used to inform and educate our Government and all New Zealanders. It will help the organisation in their mission to push for meaningful change for our rare disorder community. 

Take part in the survey on their website here. (external link)

What is Rare Disorders New Zealand?

They're one of the awesome support groups listen on our General Disability Support Organisations hub. As an umbrella group for people with rare disorders, they advocate for people who have a condition few others in New Zealand experience.

There are more than 7,000 rare disorders and new ones are discovered all the time. More than 72% of these are genetic, meaning people are born with them. Rare Disorders New Zealand (RDNZ) estimates that around 300,000 New Zealanders live with a rare disorder. 

What are RDNZ doing?

They offer patient support, connect members to groups and other members and help people to navigate the health system. They also support research efforts into rare conditions to help New Zealanders get diagnosed faster, receive good treatment and get the right services for them. 

They are currently working with the Ministry of Health on a rare disorders strategy and definition which will mean that more kiwis are able to access appropriate support and know how to get it. 

If you have any questions about the survey or the mahi (work) of Rare Disorders New Zealand, connect with the team at