Rare Voices Australia

WHO WE ARE

RVA is Australia's national organisation advocating for those who live with a rare disease. RVA provides a strong common voice to promote for health policy and a healthcare system that works for those with rare diseases. RVA works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare diseases in Australia. RVA are the unified voice of 1.2 million plus people affected by rare diseases through Australia (6-8% of the population) and 70 million globally.

Rare Voices Australia (RVA) was established in response to the consensus call from over 200 national attendees at the inaugural ?Awakening Australia to Rare Diseases? international symposium held in Fremantle, Western Australia, in 2011. Read more about the outcomes of the WA 2011 symposium.

WHAT WE DO

RVA is Australia's national organisation supporting all those who live with a rare disease. RVA provides a strong common voice to advocate for health policy and a healthcare system that works for those with rare diseases. RVA works with governments, researchers, clinicians and industry to promote research, diagnosis, treatment and services for all rare diseases in Australia. We are the voice of 1.2 million plus people affected by rare diseases throughout Australia.

How does RVA plan to serve Australians with Rare Diseases?

Between 5-8% of Australians has a rare disorder. Many others are affected or at risk but remain undiagnosed and unaware. RVA provides information to individuals, and links to other rare disease support groups and organizations.

RVA aims at advocating for improved quality of life of people living with a rare disease in Australia through advocacy at a National level, support for research and drug development, networking patient groups, raising awareness and other actions designed to fight against the impact of rare diseases on the lives of the patients and families.