Awareness & Education
Building community awareness and health professional knowledge to reduce diagnostic delays and improve pathways.
The National Voice for Rare Disease
Two million Australians live with a rare disease. Together, we make sure they're heard.
Rare Voices Australia is the national peak body uniting people, families, clinicians and researchers — driving real change for everyone living with a rare disease.
Registered charity · Proudly Australian · Person-centred since 2012
2 million
Australians living with a rare disease
7,000+
Known rare diseases
~80%
Are genetic in origin
1 in 12
Australians affected
Source: National Strategic Action Plan for Rare Diseases.
Rare on their own. Powerful together.
Living with a rare disease in Australia often means facing unique challenges: long paths to diagnosis, limited treatment options, and a sense of isolation. While each disease might be rare, the collective community is vast.
Rare Voices Australia (RVA) was established to bridge these gaps. We work at the highest levels of government and healthcare to ensure that rare diseases are a national health priority, and that no Australian is left behind regardless of their postcode or diagnosis.
Uniting over 100+ patient advocacy groups
Australia's national peak body for rare disease
One unified voice
We provide a single, strong voice for the millions of Australians living with rare diseases to amplify their needs to decision-makers.
Systemic, lasting change
We don't just solve immediate problems; we drive policy reform and collaborative research to change the system for the long term.
Person-centred always
Every action we take is rooted in the lived experience of Australians, ensuring our advocacy remains authentic and impactful.
We led Australia's first National Action Plan for Rare Diseases
Care & Support
Advocating for equitable and sustainable access to high-quality care, medications, and psychosocial support for all.
Research & Data
Driving collaborative research that prioritizes the patient voice and translates into real clinical outcomes.
Every donation gives the rare disease community a louder voice
Your support directly funds the advocacy work that changes Australian health policy and improves lives.
Funding national advocacy campaigns to ensure rare diseases remain on the Federal budget agenda.
Developing evidence-based policy papers to influence medical funding and treatment access.
Supporting the growth of patient advocacy groups to provide local support across Australia.
Donate
Support our mission with a one-off or monthly tax-deductible donation.
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Collaborate with us as an organization to drive systemic health improvements.
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Subscribe NowACNC Registered
Health Peak Body
National Action Plan
Patient-First
RVA
"For years we felt like we were shouting into a void. Rare Voices Australia gave us a microphone, a community, and a seat at the table with the people who make the laws."
Community Representative
Lived Experience Community
Rare on their own. Powerful together.
Help us ensure that no Australian living with a rare disease is left to navigate the journey alone.