The Petitions Committee invited RDNZ to provide a written submission on the petition, which will be provided to the Health Select Committee to help its consideration of the petition.
Petition of Sue Haldane for Rare Disorders NZ: Reform our healthcare system to include all New Zealanders living with a rare disorder
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.
Petition closed: 24 March 2021
Note that there were two Petitions, one through the Parliament website, one via Action Station, by Sue Haldane and RDNZ with the same request. These dual Petitions were created to target different audiences, and both Petitions were presented together at Parliament on 24 March 2021. The petitions gathered more than 8,200 signatures.