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.
National Recommendations for Rare Disease Health Care
The National Recommendations for Rare Disease Health Care outline how Australian health professionals can provide high quality care to people living with a rare disease, their families, and other carers.
The RARE Helpline aims to provide timely access to information and answer key questions people living with a rare and complex disease often face.
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THE NATIONAL STRATEGIC ACTION PLAN FOR RARE DISEASES
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.
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 and RARE Helpline
RVA is leading the collaborative development of the Rare Awareness Rare Education (RARE) Portal for rare diseases, a key deliverable of the Australian Government’s National Strategic Action Plan for Rare Diseases. The RARE Portal includes information about the RARE Helpline, which aims to provide timely access to information and answer key questions people living with a rare and complex disease often face. Visit the RARE Helpline page for more information.
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.