Advocacy
The issues we advocate on
As the collective voice of the rare disorder community, we advocate on a wide range of issues that affect people living with a rare disorder.
We regularly make submissions on proposals to change existing government policies and legislation on issues relevant to rare disorders. View our submissions here.
The Rare Disorders Strategy
Rare Disorders NZ's work on the development of the Rare Disorders Strategy and its implementation.
Rare Support Centre Aotearoa
We envision the establishment of a Rare and Undiagnosed Disorders Centre of Expertise as an effective solution to improve health system responsiveness for rare patients.
Access to rare medicines
We advocate for a separate assessment pathway for rare medicines with criteria separate to common conditions.
Coding of rare disorders
New Zealand needs to collect data on rare disorders to ensure rare patients and their health needs are visible and adequately resourced.
