Rare Voices Australia (RVA) continues to advocate for Australians living with rare disease disability. Between April and July 2026, our work included disability reform discussions, National Disability Insurance Scheme (NDIS) consultations, health and disability initiatives, research activities, and leadership forums across the sector.

EURORDIS has released the findings from its Rare Barometer survey on the mental health impacts of living with a rare disease. The findings highlight the severe and widespread unmet need for psychological support for people living with a rare disease and reinforce the need for mental health to be recognised as a core component of rare disease care.

The National Disability Insurance Scheme (NDIS) is introducing the new Support Needs Assessment. It will help decide a participant’s funding and supports. People with rare disease disability can take part in paid testing. This helps to make sure the assessment works for complex, multi-system conditions and people with high or changing support needs.

Progressing health technology assessment (HTA) reform remains a high priority for Rare Voices Australia (RVA) as the national peak body for Australians living with a rare disease.

The second Australian Rare Disease Research Network (ARDRN) virtual meeting for 2026 was held in June. The ARDRN has grown to over 120 members, including rare disease researchers from a range of jurisdictions, disciplines and career stages.

On 19 June 2026, Australian Health Ministers met to discuss several health system reform priorities. As published in the follow-up Communique, Health Ministers agreed to add mucopolysaccharidosis type 1 (MPS I) and type 2 (MPS II) to Australia’s newborn bloodspot screening (NSB) programs.

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...

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.