Rare Disorders NZ (RDNZ) welcomes the recommendations within the New Zealand Health and Disability System Review.  This Review seeks to make long term improvements which would benefit all New Zealanders including those with a rare disorder.

“We particularly welcome the proposal that people be assessed for support on need, not diagnosis,” says RDNZ Chief Executive Lisa Foster.

“This vital change in focus would make a huge difference to the thousands of people with undiagnosed rare conditions, as well as others who don’t tick a box and currently fall through the gaps.”

“We also applaud the Review’s emphasis on keeping people well, rather than just focusing on treating people when they become sick.”

There are more New Zealanders living with a rare disorder than those diagnosed with diabetes - an estimated 300,000 people. There are over 6,000 different conditions with a wide range of symptoms that impact on daily life in varied ways but with common barriers.

RDNZ believes the Review has strong recommendations for building an equitable system, and will continue working closely with our government partners to ensure the collective voice of the rare disorder community is heard.

“New Zealand cannot have inclusive healthcare unless everyone is included. RDNZ will continue to ensure that the needs of people living with a rare disorder are acknowledged so they’re not left out,” says Lisa.

RDNZ is already calling for changes to the current system to ensure people living with a rare disorder are considered within our healthcare system. The Fair for Rare NZ campaign wants acknowledgement of the common challenges facing the rare disorder community through the development of a National Rare Disorder Framework. NZ lags behind most OECD countries in supporting people living with rare disorders and their families to access the needed health and social care. 

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