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

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.

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.