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.
Rare Awareness Rare Education (RARE) Portal
The RARE Portal contains current, reliable and straightforward information and resources for all rare disease stakeholders customised for the Australian context. The RARE Portal has been funded by the Australian Government and is a key deliverable of the National Strategic Action Plan for Rare Diseases.
Rare Disease Disability Project
As the national peak body for Australians living with a rare disease, RVA is leading the Rare Disease Disability Project (the Project). We are proudly delivering projects for the Peer Support and Capacity Building grant for the National Disability Insurance Scheme. This 2-year Project will conclude in December 2026 and is being guided by a Stakeholder Reference Group comprising people with lived experience of rare disease disability and diverse representation.
The National Recommendations for Rare Disease Health Care
The National Recommendations for Rare Disease Health Care (the Recommendations) were written to help health professionals provide quality care for people living with rare disease, including people with a diagnosed rare disease and those who have not yet received a diagnosis. The Recommendations are aligned with the Australian Government’s National Strategic Action Plan for Rare Diseases.
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.
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, a key deliverable of the Australian Government’s National Strategic Action Plan for Rare Diseases. The RARE Portal is Australia’s growing national resource for rare diseases.
RVA Online Education
RVA’s online education complements the workshops, webinars and customised mentoring support provided to RVA Partner organisations. Available 24/7, the site contains several free and restricted courses.
