As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) has lodged a submission to the Senate Community Affairs Legislation Committee Inquiry into the National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026 (the Bill).

The Australian Government is implementing reforms to better protect the rights of airline and airport consumers. This includes the new Aviation Consumer Ombuds Scheme (the Scheme), an independent service to help consumers resolve complaints about airlines and airports, that sits within the Department of Infrastructure, Transport, Regional Development, Communications, Sport and the Arts.

The first Australian Rare Disease Research Network (ARDRN) virtual meeting for 2026 was held in May. The ARDRN has grown to over 120 members, including...

The National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia (CHF) have released the new Statement on Consumer and Community Involvement in Health and Medical Research (the Statement).

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)...