Petition of Sue Haldane for Rare Disorders NZ: Develop a National Rare Disorder Framework
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That the House of Representatives urge the Government to acknowledge the universal challenges faced by people living with a rare disease, and the inequity within the current system, by committing to the development of a New Zealand National Rare Disorder Framework.
"I try to imagine if, when Lizzie was diagnosed with a lifelong condition, there was a blueprint for coordinated family care. Of course, the person diagnosed should receive laser-like focus, but primary caregivers also need a strategic support plan and formalised care."
Sue Haldane, Mum of Lizzie
Read Lizzie's story
There are around 300,000 Kiwis living with a rare disease. NZ lags behind most OECD countries in supporting people living with rare disorders and their families to access the best healthcare. We believe a shift in mind-set is needed for rare disorders to stop being considered in isolation, and instead to be regarded as a significant factor within health policy frameworks. This is in alignment with the global rare disease movement headed by Rare Disease International.
Closing date: 17 March 2021