Rare Disorders NZ has made a submission to Pharmac on the proposal to decline inactive funding applications.

Rare Disorders NZ is pleased to see Pharmac aiming to provide more clarity about which medicines they are actively considering for funding. We welcome any additonal transparency and efficiency from Pharmac. We agree that it is important people have certainty about whether a medicine is, or is not, being considered, even if Pharmac’s decision is to decline funding.

Along with making it clear which applications are no longer being considered, Rare Disorders NZ urges Pharmac to have processes that ensure that individuals and groups who make submissions throughout the application process are notified of any decisions, further consultation opportunities and outcomes.

Read our full submission here.

Our Collective

Rare Disorders NZ is the collective voice of all people living with a rare disorder and their whānau. Our rare collective is made up of more than 160 disorder-specific support groups.

Our work is informed by the issues important to our collective. We work together to improve healthcare and wellbeing for everyone living with a rare health condition in New Zealand.

Learn more