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.
Leadership & Coordination Mechanism
The Rare Disorders Strategy outlines the need to establish leadership and coordination mechanisms in the health system to spearhead responsiveness to rare disorders. This sounds good to us. Let's get it done!
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.
