Petition of Sue Haldane for Rare Disorders NZ: Develop a National Rare Disorder Framework

Click here to sign the petition

Sue and Lizzie v2

Petition request

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

Petition reason

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: 1 September 2020

Click here to sign the petition