On Tuesday, 12 May 2026, the Hon Dr Jim Chalmers MP delivered the Albanese Government’s 2026-27 Federal Budget (the Budget). Rare Voices Australia (RVA) has been reviewing the Budget’s impacts on the rare disease sector.

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) acknowledges the Australian Government’s intent to...

In December 2025, the Department of Health, Disability and Ageing (the Department) commenced public consultation on the evaluation of the Medical Research Future Fund (MRFF) Research Missions Program...

In February 2026, the World Economic Forum published a seminal white paper entitled, Making Rare Diseases Count...

EURORDIS shared factsheets with RVA presenting Australian findings from three Rare Barometer surveys.

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...