“I just left with such a buzz and so much joy. I can’t fault it. It was tiring and overwhelming but so fabulous.” RVA Ambassador

“This was honestly one of the best conferences I have been to with a good mix of presentations, Q&A and highly interactive workshops. The Summit was also the perfect size—not too big and not too small. Large enough to have a diverse set of attendees but small enough that you had the opportunity to [...]

“… two brilliant days at the National Rare Disease Summit in Brisbane, coordinated by the incredible Rare Voices Australia, with so many passionate contributions from the whole sector, patient groups, government, clinicians, researchers, industry. The meeting was a stark reminder that so much of the care and progress for people with rare diseases comes [...]

“Felt so honoured to be on a panel and it has already been so beneficial to us so thank you again so very much for the opportunity. Enjoy some downtime after what was a brilliant few days.” RVA Partner (rare disease group/organisation representative)

“Thank you for a wonderful day yesterday and congratulations on a fantastic event.” RVA Partner (rare disease group/organisation representative)

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.

In December 2025, Health Ministers acknowledged to screen all newborn babies for X-ALD.

Rare Voices Australia (RVA) continues to advocate for Australians living with rare disease disability through engagement in key disability reform initiatives...

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