Rare Voices Australia has released its newly-developed policy platform, setting out recommendations to government to improve the lives of Australians living with a rare disease.
The National Rare Disease Framework, advocates for:
- A system that is equitable, accessible, consistent, transparent, timely and person-centred;
- Collaborative action that includes input from patients, healthcare, government, research and industry;
- An opportunity for all Australian governments to provide bi-partisan support and work in partnership towards a national coordinated and collaborative approach;
- Effective rare disease policy to transform patients’ lives.