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RDNZ Petition


As you may be aware, New Zealand lags behind many countries in our recognition and support of people living with a rare disease. This fact often surprises people as our small nation is perceived as being at the forefront of social support and change, with kindness as a foundation of Prime Minister Jacinda Ardern’s policies.


Sue Haldane, a mother of a child with a rare disorder (22q Deletion Syndrome), has spent 17 years dealing with barriers within our health system to ensure her daughter Lizzie’s needs are met. Now Sue is determined that the journey will be easier for future generations of New Zealanders living with a rare disorder – currently around 6% of the population, or 300,000 people.


We want to show our Government that it’s time to take rare diseases seriously! The 300,000 New Zealanders and their families living with a rare health condition deserve a health system that focuses on speeding up diagnosis and improving care.


Please help Sue Haldane, Rare Disorders NZ and the 300,000 New Zealanders living with a rare health condition to gain acknowledgment and support through the development of a National Rare Disorder Framework.


Sign and share our Petition – open to signatures from any country – and help us make New Zealand fair for rare! https://our.actionstation.org.nz/petitions/reform-our-health-system-to-include-all-new-zealanders-living-with-a-rare-disorder

Thank you for your support.


Ms. Lisa Foster

Chief Executive

Rare Disorders NZ (formerly NZORD)

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