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Rare Voices Australia

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 the estimated two million Australians 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 them working with all key stakeholders including people living with a rare disease, governments, key peak bodies, researchers, clinicians, and industry. They advocate for the best outcomes for Australians living with a rare disease.

As the national peak body for Australians living with a rare disease, RVA's work is non-disease specific and is based on the commonalities of rare disease. Their advocacy focuses on rare disease policy, processes and systems. RVA advocates for all rare disease communities and provides RVA partner organisations (rare disease groups) with rare disease policy support, advocacy mentorship and strategy, access to education and more.

The RARE helpline has well trained and compassionate staff that are available to answer questions and can provide:

  • reliable information about particular diseases
  • advice for people seeking a diagnosis
  • contact details for support organisations and clinical centres; and
  • emotional support.

Information lines / help lines

  • Call 0499 549 629 Mon to Fri, 9am to 5pm AEDT
  • Or visit the RARE Portal

Recommended links

This information was originally published on healthdirect - Rare Voices Australia.

Last reviewed: May 2023

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The information is not a substitute for independent professional advice and should not be used as an alternative to professional health care. If you have a particular medical problem, please consult a healthcare professional.

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