Rare Voices Australia


YOUR NATIONAL STRATEGIC ACTION PLAN FOR RARE DISEASES

Read the Action Plan now

Rare Voices Australia (RVA) is the peak national 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 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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THE NATIONAL STRATEGIC ACTION PLAN FOR RARE DISEASES

In 2020, the Minister for Health launched the National Strategic Action Plan for Rare Diseases.
RVA led the collaborative development of the National Strategic Action Plan for Rare Diseases, which has three interrelated Pillars. 


AWARENESS
& EDUCATION 


CARE &
SUPPORT 


RESEARCH
& DATA

Read the Action Plan now

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.

Our Partners

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. 

Learn more