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
The Rare Disorders Strategy has been delivered, now it must be implemented by government health agencies without delay.
Rare Support Centre Aotearoa
We want to see the establishment of a Rare and Undiagnosed Disorders Centre of Expertise to improve health system responsiveness for rare patients.
Access to rare medicines
A separate assessment pathway for rare disorder medicines with criteria separate to common conditions is essential for equitable medicine access.
Coding of rare disorders
Data is essential to understand the prevalence of rare disorders in Aotearoa, improve communication between care providers and ensure government funding and resources are adequately allocated.
