NZORD changes name to Rare Disorders NZ

5 June 2019

Today the New Zealand Organisation for Rare Disorders changes its name after 19 years of supporting thousands of families living with rare health conditions.

“The new name, Rare Disorders NZ, puts the people supported by the organisation first. It better reflects the modern, effective organisation of today with links to more than 130 support groups and partners, and it clarifies our purpose,” says Chief Executive Gill Greer. “We are determined to make a difference for people living with rare disorders, especially as New Zealand lags so far behind other countries in providing a fair go for this vulnerable group.”

The New Zealand Organisation for Rare Disorders was established in September 2000 and has a long history as the connector hub and collective voice of the rare disorder community. Rare Disorders NZ will continue to represent and support more than 400,000 Kiwis with a rare health condition. There are over 7,000 rare disorders, and one in ten New Zealanders, half of whom are children, are affected.

Rare Disorders NZ welcomes the Government’s focus on improving mental health of vulnerable New Zealanders, including those living with rare diseases and their families/whanau. We are disappointed that PHARMAC’s budget will only be increased by $10 million over four years. This budget increase is too low to impact on the lives of people living with rare disorders, who experience challenges from diagnosis to access to treatment, as the model discriminates against those living with a rare health condition. There is still no recognition of the need for a cohesive, national policy or action plan for this sizeable population as in Australia and other countries.

Rare Disorders NZ celebrates this new phase in spite of the challenges of reduced Ministry of Health funding, and will continue to champion a fair go for all New Zealanders living with a rare disorder.

The Rare Disorders NZ logo features a kōtare, the New Zealand kingfisher. Kingfishers are found throughout New Zealand in a wide range of habitats and are common, but rarely seen compared to other native birds. Māori admired kōtare for being like a watchful sentry.

“Our new logo has a sense of action and uplifting movement which fits the continued aims of our organisation,” says Gill. “We work for real change in the health journeys of people living with rare health conditions, from diagnosis through to access to medicines and services.”

About RDNZ

Rare Disorders NZ (formerly NZORD) is a connector hub and collective voice for patients and families affected by rare disorders. Rare diseases affect about one in ten New Zealanders.

There is no acknowledged definition of rare disease in NZ, however RDNZ follows the European Union policy which defines a disorder as rare when it affects less than 1 in 2000. More than 7,000 rare disorders collectively affect around 400,000 New Zealanders. Of this number, 50% are children.

www.raredisorders.org.nz

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