As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) works with all key stakeholders to drive the best outcomes for Australians living with a rare disease. There are several ways that you can help to support the estimated two million Australians living with a rare disease. We’ve listed some of these ways below. If you’ve got another idea, you are welcome to contact our team and we’ll respond as soon as possible.

Sharing your personal story benefits the person telling the story and those who share a similar experience. It can build connection, reduce feelings of isolation, and encourage others to speak openly about their own experiences.

Ensuring parliamentarians are aware of the impact of rare diseases in Australia is vital. As a local constituent, you can request to meet with your local Federal Member of Parliament to share your experience of living with a rare disease. If you are unsure which electorate you are based in, you can use this tool. You can then Google ‘Member for XX’ to learn the name and contact details of your local Member.

To find your state MP, go to your state parliament or electoral commission website and use your home address in the electorate search tool.

Subscribing to RVA’s monthly eNewsletter is a great way to stay informed about the latest news, events and resources relevant to the Australian rare disease sector.

RVA also distributes a RARE Portal eNewsletter twice a year (mid-year and at the end of the year). Subscribing to the RARE Portal eNewsletter ensures you’re receiving the latest RARE Portal news.

The Rare Awareness Rare Education (RARE) Portal is Australia’s growing national resource for rare diseases. The information, links and resources on the RARE Portal are curated via a methodical and purposeful process. All rare disease stakeholders are invited to help maintain the currency and accuracy of information on the RARE Portal.

RVA’s Ambassador Program was first introduced in 2022 to celebrate 10 years of rare disease advocacy. To continue promoting diversity and showcasing the breadth of rare diseases and people’s unique stories, RVA refreshed the Ambassador Program in 2025 through an expression of interest (EOI) process. RVA will reopen EOIs for the 2028-30 Ambassador Program in late 2027.

RVA formally partners with:

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

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

RVA is a registered charity and has Direct Gift Recipient (DGR) endorsement. All donations over $2 (AUD) are tax deductible. Donations help RVA to work towards the best outcomes for Australians living with a rare disease.

If you would like to include RVA in a Will, we recommend you seek legal assistance and/or contact RVA for more information.

Following RVA on social media helps you stay connected and receive real-time updates on the latest news, events and resources relevant to the Australian rare disease sector.