As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) works with all key stakeholders in the rare disease sector to drive the best outcomes for Australians living with a rare disease. Key stakeholders include people living with a rare disease, governments, advocates, researchers, clinicians, and industry.

RVA’s work is non-disease specific and based on the commonalities of rare disease. Our advocacy focuses on rare disease policy, processes and systems. We:

• Are person-centred.
• Adopt a systemic focus.
• Aim for a unified voice.
• Actively build and maintain partnerships.
• Work for equity of access and participation.
• Equip and empower.
• Are solutions and results oriented.
• Are credible and act with integrity.

The breadth of RVA’s work continues to grow and evolve across the broad range of areas that impact Australians living with a rare disease, including awareness and education, care and support (particularly rare disease disability advocacy) and research and data.

Stay up to date with RVA’s work and rare disease news across Australia by subscribing to our monthly eNewsletter.

As the national peak body, RVA lodges Submissions in response to the policies, processes and systems that impact Australians living with a rare disease.

RVA works collaboratively to lead the development and implementation of rare disease policy in Australia. This involves liaising with all governments in Australia to influence policy and improve the systems that impact people living with a rare disease.

The Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) is the first nationally coordinated effort to address rare disease in Australia. RVA led the collaborative development of the Action Plan in 2018 and 2019 through an extensive nation-wide multistakeholder consultation process. The Action Plan was launched in 2020 by the Federal Minister for Health with bipartisan support.

A key strength of the Action Plan is the shared responsibility across the rare disease sector for its implementation and stewardship. RVA has been leading this collaborative implementation since 2020. RVA’s key advocacy priority is the full implementation of the Action Plan.

RVA formally partners with:

• Rare disease groups/organisations.
• Individuals living with a rare disease (including family and carers), researchers, clinicians and other care professionals.

The Action Plan identifies the importance of building the capacity of rare disease groups/organisations. RVA’s Education Program is a key benefit of being an RVA Partner group/organisation, alongside other benefits such as advocacy and strategy support. The Education Program includes resources designed to enhance the capacity and professionalism of rare disease groups/organisations.

• RVA’s Research Partnerships Program
• The Australian Rare Disease Research Network
• Project Partnerships
• The Round Table of Companies for industry
• Make a Donation

• Rare Disease Disability Toolkit
• Rare Awareness Rare Education (RARE) Portal
• RARE Help
• RVA online education