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.

Below are the updates for the Rare Disease Disability Project for March 2026...

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.

Below are the updates for the Rare Disease Disability Project for March 2026...

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.