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Rare Voices Australia

Rare Voices Australia (RVA) is the 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.

Vision and mission

RVA is dedicated to working with all key stakeholders to drive the best outcomes for Australians living with a rare disease.

RVA provides collaborative leadership for the development and implementation of rare disease policy in Australia.

How Rare Voices Australia can help

RVA's person-centred focus sees RVA working with all key stakeholders including governments, key peak bodies, researchers, clinicians, and industry. They advocate for the best outcomes for Australians living with a rare disease.

As Australia’s peak body for Australians living with a rare disease, RVA focuses on broader systemic policy development and change.

They provide RVA Partners with rare disease policy support, advocacy mentorship and strategy, access to education and more.

Information lines / help lines

  • Call 0497003104 Mon to Fri, 9am to 5pm AEDT

Recommended links

Last reviewed: February 2021

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