
In 2020, Rare Voices Australia (RVA) launched our inaugural RVA Ambassador Program to coincide with our 10th anniversary year. The initiative continued beyond 2020 due to popular demand and has since gone from strength-to-strength. The RVA Ambassador Program provides people living with a rare disease and those with professional experience of working with rare diseases with the opportunity to share their experiences with the broader rare disease sector.


Images (left to right): RVA Ambassadors at a Parliamentary Event and RVA Ambassadors at the Gala Event 10th anniversary celebrations at the 2022 National Rare Disease Summit
To continue promoting diversity and showcasing the breadth of rare diseases and people’s unique stories, we will be refreshing our RVA Ambassador Program in 2025 through an expression of interest (EOI) process. We’re keen to hear from a broad range of Australians living with a rare disease, including carers; family members; those living with an undiagnosed rare condition; bereaved parents; people living with a disability; and so on.
Important: Please note that this is a volunteer role and that RVA does not have funding to provide remuneration to RVA Ambassadors.
Thank you to our inaugural ambassadors, listed below, for their invaluable contributions since being appointed official RVA Ambassadors.
- Katie Alexander
- Andrew Bannister
- Lachy Beckett
- Ryan Brown
- Ebony Callaghan
- Nathan Charles
- Tim Fulton
- Tammie Rees
- Beck Webber
- Renae Wood

Expressions of Interest Sought: 2025-27 Rare Voices Australia Ambassador Program
RVA is currently seeking EOIs from those interested in the 2025-27 RVA Ambassador Program. We are looking for between 8-10 ambassadors. Before applying, please read the information below to see if you are a suitable candidate.
Rare Voices Australia Ambassador Requirements
- Lived or professional experience of rare diseases and based in Australia
- Demonstrated use of personal network and platforms to advocate for the best outcomes for the broader rare disease community
- A demonstrated supporter of RVA
- Willing to review and consider signing RVA’s Ambassador Agreement, which can be provided on request to those interested
- Aligned with RVA’s ‘ways of working’ as an RVA Ambassador, which are outlined below
RVA Ambassador Opportunities
- Share their personal story, which will be featured as a written article on RVA’s website. We will also invite ambassadors to film a short video to complement their written story. Each personal story will also be promoted in an edition of our monthly eNewsletter and RVA’s social media channels.
- Email a copy of the National Strategic Action Plan for Rare Diseases to their local Federal and State Members of Parliament (MPs). Ambassadors are invited to organise a meeting with their local MPs to speak about their personal experience of living with a rare disease and rare diseases in general.
- Attend RVA events in 2025-27 in a volunteer capacity where appropriate. RVA will reimburse ambassadors in line with our Travel Policy for RVA Ambassadors.
- Use their networks (e.g. social media, newsletter databases etc.) to cross promote RVA’s work and key initiatives.
- Contribute to relevant media stories from the perspective of an individual living with a rare disease or as a professional who has worked with rare diseases.
All RVA Ambassadors will receive a Welcome Pack via email. We will also support each ambassador in their role as needed. Please direct any questions you may have regarding RVA’s Ambassador Program to: [email protected]
Rare Voices Australia: How We Work
Ways of working
We are person-centred
We want the outcomes that are best for each person. We will be driven by people’s individual needs and what works best for them.
We adopt a systemic focus
We are uniquely positioned to engage in systemic advocacy. Effective reform to systems and processes must be prioritised to reduce the number of individuals and groups repeatedly facing common challenges. This is vital to achieving sustainable change at scale.
We aim for a unified voice
We recognise that without a unified voice, the rare disease sector cannot be successful in achieving the support Australians living with a rare disease need. Therefore, RVA prioritises consultation, conversation, co-design, support and education within the sector to ensure our voice to policymakers and the broader community is unified and reflects the views of key stakeholders.
We actively build and maintain partnerships
We are the voice of the sector, magnifying the voices of all stakeholders that share our goals. We recognise that achieving the transformation we want to see in Australia will require working in partnership with key stakeholders.
We work for equity of access and participation
We believe equity of access and participation is vital for all Australians living with a rare disease. We ensure equity is a key factor in the planning and design of our initiatives, and the principles of equity will be foremost in our advocacy.
We equip and empower
We aim to equip and empower groups/organisations and individuals with the skills they need to advocate for themselves and their communities.
We are solutions and results oriented
We must be strategic in addressing the multiple challenges in rare disease. We want to see results for Australians living with a rare disease. This requires progressing long-term goals and being pragmatic. It’s important to maintain traction and continue celebrating easier wins and achieving results, while maintaining effective stakeholder relationships and partnerships.
We are credible and act with integrity
We acknowledge that our effectiveness is only as good as our credibility and integrity. We recognise the importance of maintaining RVA’s reputation as a representative, knowledgeable, evidence-based and well-respected national peak body. We ensure that our actions and words continue building RVA’s credibility.