Rare Voices Australia (RVA) is the national peak body for Australians living with a rare disease. RVA provides a strong, unified voice to advocate for policy as well as health, disability and other systems that work for people living with a rare disease. Our person-centred focus sees us working with all key stakeholders, including people living with a rare disease, governments, key peak bodies, researchers, clinicians and industry. We advocate for the best outcomes for Australians living with a rare disease.
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In 2020, the Minister for Health launched the National Strategic Action Plan for Rare Diseases (the Action Plan).
RVA led the collaborative development of the Action Plan, which has three interrelated Pillars.
AWARENESS
& EDUCATION
CARE &
SUPPORT
RESEARCH
& DATA
Partner with RVA
RVA partners with key stakeholders in a variety of ways. Whether you are leading a rare disease support organisation that is looking to become an RVA Partner, or are a researcher looking to partner with RVA on your latest project, we’re open to hearing from you.
RARE Portal
RVA is leading the collaborative development of the Rare Awareness Rare Education (RARE) Portal for rare diseases. In line with the National Strategic Action Plan for Rare Diseases, the portal will be an accessible multi-purpose website containing information and resources for rare diseases that are customised for the Australian context.
RVA Online Education Portal
RVA’s Online Education Portal complements the workshops, webinars and customised mentoring support provided to RVA Partner organisations. Available 24/7, the site contains several free and restricted courses.
Rare Disease Day
Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease. The campaign is organised globally by EURORDIS – Rare Diseases Europe, Rare Diseases International and 68 national alliances. RVA is the national alliance that represents Australia for Rare Disease Day annually.
