Australians with rare disease will have extended and improved lives, through the provision of a coordinated care and health system. This will include access to world class, best practice provision of:
- Support services
Rare Voices Australia will provide a unified voice to improve the lives of all Australians affected by rare disease.
What we do
Rare Voices Australia aims to:
Collaborate and connect all Australians living with a rare disease.
Advocate for a national rare disease strategy.
Raise awareness of rare disease issues.
Educate policy and decision makers.
Rare Voices Australia (RVA) is Australia’s peak body for rare disease, advocating for Australians living with rare disease. We provide a strong, common voice to advocate for health policy and a healthcare system that works for people living with rare disease. Our patient-centred focus sees RVA working with key stakeholders including patients, key peak bodies, governments, researchers, clinicians and industry to promote rare disease, diagnosis, access to treatments, data collection, coordinated care, access to services and coordinated research.
Current data, which is based on international conservative estimates, indicates that almost 2 million Australians live with a rare disease, almost half that number are children. People living with rare disease fight against their disease each day. Unfortunately, in many cases, the health system is not equipped to respond to the needs of those living with rare diseases, being overwhelmingly geared towards supporting diseases that affect large numbers of people. The burden of rare disease remains unacceptably high for patients, families, communities and the health system. Collectively, rare diseases affect more Australians than diabetes. Similar prioritisation by the health system will not only make a difference to the lives of families affected by rare disease but will help to reduce the economic cost to the health system. To ensure the most equitable, effective, efficient and coordinated approach to rare diseases and to place Australia in-line with the EU, the UK and other parts of the world, Australia needs a National Rare Disease Framework.
RVA was established in 2012 in response to a consensus call from over 200 national attendees at the inaugural ‘Awakening Australia to Rare Disease’ international Symposium held in Fremantle, Western Australia in 2011. You can learn more about the outcomes from the Symposium here.
How we're funded
RVA is a registered Company Limited by Guarantee and operates under a membership model. We rely on grants, donations and project funding and have different levels of partnership. Our RVA partners include patient support groups, not-for-profit organisations and individuals. Pharmaceutical companies provide funding through participation in our Round Table of Companies and project sponsorship. Additionally, we rely on philanthropic funding, the fundraising efforts of our partners and donations from the Australian community. RVA is grateful for our partners and supporters.