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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 people living with a rare disease. Their person-centred focus sees them working with key stakeholders.

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 provides collaborative leadership for the development and implementation of rare disease policy in Australia. RVA is leading the collaborative implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases (Action Plan). A key deliverable of the Action Plan is the Rare Awareness Rare Education (RARE) Portal, Australia's growing national resource for rare diseases. The RARE Portal houses the RARE Helpline, which provides service navigation support to Australians with rare and complex diseases.

Information lines / help lines

  • Call the RARE Helpline (0499 549 629) Mon to Fri, 9am to 5pm AEST

Programs, apps and tools

Recommended links

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

Last reviewed: May 2025

Information from this partner

Found 5 results

Lived experience of rare disease including genetic disorders

Sharing your personal story of living with a rare disease/genetic disorders can have a number of benefits.

Read more on Rare Voices Australia website

Helpful information for rare diseases including genetic disorders

International collaboration is key in rare disease. Approximately 80% of rare diseases are genetic disorders.

Read more on Rare Voices Australia website

Learn more about rare diseases including genetic disorders

An estimated two million Australians live with a rare disease, many of these conditions are genetic disorders.

Read more on Rare Voices Australia website

Rare Aware – Resources for Rare Diseases

Read more on Rare Voices Australia website

RVA Education – Education for the Rare Disease Sector

Read more on Rare Voices Australia website

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