New Zealand Parliament Pāremata Aotearoa

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

Published date: 4 Mar 2020

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 unfairness within the current system, by committing to the development of a New Zealand National Rare Disorder Framework.

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.

Signatures are now being accepted

22 days left Closing date: 1 Sep 2020 NZ Time
Number of Signatures: 3544
Closing date: 01 Sep 2020