The nationally codesigned Rare Disease Disability Toolkit (the Toolkit): Rare Voices Australia (RVA) continues to promote the first round of Toolkit...

Rare Voices Australia (RVA) welcomes the release of Australia’s first National Health and Medical Research Strategy 2026–2036 (the Strategy), a landmark step towards a more coordinated, equitable and impact-focused health...

Rare Voices Australia (RVA) welcomes the release of Australia’s first National Health and Medical Research Strategy 2026–2036 (the Strategy), a landmark step towards a more coordinated, equitable and impact-focused health...

The nationally codesigned Rare Disease Disability Toolkit (the Toolkit): Rare Voices Australia (RVA) continues to promote the first round of Toolkit...

The nationally codesigned Rare Disease Disability Toolkit (the Toolkit): Rare Voices Australia (RVA) continues to promote the first round of Toolkit...

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).

Stakeholder Reference Group (SRG) members met for the second time this year in April. The SRG continues to provide lived-experience guidance for the Rare Disease Disability Project.

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.