The Stakeholder Reference Group (SRG) met this month and approved the design principles for the nationally codesigned Rare Disease Disability Toolkit (the Toolkit) and the resource topics for Stage 1 of the Toolkit. Stage 1 resources will be available on RVA’s website in December 2025...

The Australian Rare Disease Research Network (ARDRN) held its first virtual meeting on 18 September 2025, with 38 rare disease researchers from a range of jurisdictions...

Rare Voices Australia (RVA) recently provided input into the consultation on the draft Statement on Consumer...

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

The Hon Mark Butler MP, Minister for Health and Ageing and Minister for Disability and the National Disability Insurance Scheme...

Below are the updates for the Rare Disease Disability Project for August 2025...

Rare Voices Australia (RVA) has been engaging in several key disability initiatives throughout 2025 to advocate on behalf of Australians living with rare disease disability...

Between 14–18 August 2025, Rare Voices Australia (RVA) attended the 48th Annual Scientific Meeting of the Human Genetics Society of Australasia...

In June, RVA Partner organisations were invited to apply for funding for RVA Partner Project Grants as part of the work being undertaken for the Rare Disease Disability Project (the Project)...

The Kids Research Institute Australia (formerly the Telethon Kids Institute) and Rare Voices Australia (RVA) have published Australia’s Top 10 Rare Disease Research Priorities...