Advocacy
The issues we advocate on
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.
Strategy Implementation
We are strongly advocating for the Rare Disorders Strategy to be implemented without delay to start seeing meaningful improvements in health system responsiveness for people living with a rare disorder.
Bringing about the Rare Disorders Strategy
Strong advocacy by Rare Disorders NZ and the rare community was instrumental in the development of the Rare Disorders Strategy.
Newborn Screening
We advocate for the expansion of the newborn metabolic screening programme and improved care pathways following diagnosis.
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.
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.
