Rare Voices Australia Ltd.

Australia Australia

About Rare Voices Australia Ltd.

Rare Voices Australia (RVA) is the national peak body for Australians living with a rare disease. We advocate for the best outcomes 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 key stakeholders in the rare disease sector including governments, key peak bodies, researchers, clinicians and industry.

Ahead of Rare Disease Day (RDD) in 2020, Australia’s Minister for Health launched the National Strategic Action Plan for Rare Diseases (the Action Plan), the first nationally coordinated effort to address rare diseases in Australia. The Action Plan’s collaborative development was led by RVA and informed by extensive stakeholder consultation. Since the Action Plan’s launch, RVA has continued to work with State and Federal Governments, as well as other stakeholders, to lead implementation.

RVA also hosts the biennial National Rare Disease Summit, provides education and mentorship support to RVA Partners (rare disease support groups) and holds quarterly meetings with industry via the RVA Round Table of Companies.

Australia first participated in RDD in 2009 and has since hosted many exciting events. RVA is the national alliance representing Australia on the global RDD Outreach Group that collaboratively develops annual RDD activities. We have also been appointed to the Rare Disease Day Steering Committee, which looks at RDD with a longer-term strategic view. To mark RDD annually, RVA typically organises a Parliamentary Event and speaks at events. We also participated in EURORDIS’ webinar about illuminating landmarks in 2020.

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