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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.

Programs, apps and tools

Recommended links

Last reviewed: June 2026

Information from this partner

Found 54 results

RVA Education – Education for the Rare Disease Sector

Rare Voices Australia Online Education Rare Voices Australia (RVA) is the national peak body for Australians living with a rare disease. We advocate for the best outcomes for Australians living with a rare disease. This website complements RVA’s Education Program. Courses Available to Everyone Nothing

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Helpful information for rare diseases including genetic disorders

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

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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.

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Aboriginal and Torres Strait Islander People - Rare Awareness Rare Education Portal

Rare Disease Resources for the Aboriginal and Torres Strait Islander Community This collection of helpful links is for Aboriginal and Torres Strait Islander people who live with rare diseases. These links have been put together as part of the Australian Government’s plan to help people with rare diseases. This plan is called the

Read more on Rare Voices Australia website

Regional, Rural and Remote Community - Rare Awareness Rare Education Portal

Rare Disease Resources for the Regional, Rural and Remote Community This collection of helpful links is for those in the regional, rural and remote community who live with rare diseases. These links have been put together as part of the Australian Government’s plan to help people with rare diseases. This plan is called the

Read more on Rare Voices Australia website

Culturally and Linguistically Diverse Community - Rare Awareness Rare Education Portal

Rare Disease Resources for the Culturally and Linguistically Diverse Community This collection of helpful links is for culturally and linguistically diverse people who live with rare diseases. These links have been put together as part of the Australian Government’s plan to help people with rare diseases. This plan is called the

Read more on Rare Voices Australia website

Acromegaly - Rare Awareness Rare Education Portal

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Aarskog-Scott syndrome - Rare Awareness Rare Education Portal

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Acalvaria - Rare Awareness Rare Education Portal

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Acrodysostosis - Rare Awareness Rare Education Portal

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