In December 2025, Health Ministers acknowledged to screen all newborn babies for X-ALD.

Rare Voices Australia (RVA) continues to advocate for Australians living with rare disease disability through engagement in key disability reform initiatives...

Research Australia, in collaboration with the National Centre for Epidemiology and Population Health at the Australian National University (ANU)...

Thank you to everyone who attended Rare Voices Australia’s (RVA) Rare Disease Day Parliamentary Event on 2 March 2026. Hosted by the Parliamentary Friends of Australians...

In Australia, landmark illuminations are coordinated by passionate volunteers. Download the current list of Australian landmarks that will be illuminating for 2026 Rare Disease Day.

In 2024 and 2025, Rare Voices Australia (RVA) contributed to the review of the 2016 Statement on Consumer and...

On 2 December 2025, Rare Voices Australia (RVA) facilitated the inaugural Rare Disease Disability Network Showcase (the Showcase) in Brisbane, ahead of the International Day of People...

Rare Voices Australia (RVA) continues to advocate for Australians living with rare disease disability through engagement in key disability reform initiatives...

Rare Voices Australia (RVA) has been engaging in several key disability initiatives throughout 2025 to advocate on behalf of Australians living with rare disease disability...

Rare Voices Australia (RVA) congratulates Rosemary Huxtable AO PSM, Chair of the National Health and Medical Research Strategy (National Strategy), and the broader development team on releasing Australia’s first-ever...

The Australian Rare Disease Research Network (ARDRN) held its first virtual meeting on 18 September 2025, with 38 rare disease researchers from a range of jurisdictions...

Rare Voices Australia (RVA) recently provided input into the consultation on the draft Statement on Consumer...