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.

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...

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).

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.

Research Australia, in collaboration with the National Centre for Epidemiology and Population Health at the Australian National University (ANU)...

In 2024 and 2025, Rare Voices Australia (RVA) contributed to the review of the 2016 Statement on Consumer and...

The Medical Services Advisory Committee (MSAC) has published its advice on newborn bloodspot screening (NBS)...