As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) facilitates several events to bring together key stakeholders in the rare disease sector, including Australians living with a rare disease, governments, key peak bodies, researchers, clinicians and industry. Attendance is by invitation only to ensure appropriate representation across the sector.
The National Rare Disease Summit (the Summit) and Rare Disease Day Parliamentary Events are regular features of the Australian rare disease calendar.
National Rare Disease Summit
The biennial National Rare Disease Summit brings together key stakeholders in the rare disease sector for a two-day program that generally includes a mix of plenary sessions, panel discussions, group work and networking opportunities.
Each Summit has its own unique theme aligned with achieving the best possible health and wellbeing outcomes for Australians living with a rare disease through the collaborative implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan). The Summit has been held in 2015, 2018, 2022 and 2024. The 2020 Summit was delayed due to the COVID-19 pandemic. RVA subsequently facilitated a virtual Summit in 2021.
Photos from the 2024 National Rare Disease Summit
Summit Feedback
“A short note to congratulate you and your team on hosting a wonderful conference in Brisbane. My first Rare Voices Australia conference, but not my last. I learned so much about rare diseases, the research and collaboration that’s going on and the patient and persistent advocacy”
Industry
“I just left with such a buzz and so much joy. I can’t fault it. It was tiring and overwhelming but so fabulous.”
RVA Ambassador
“This was honestly one of the best conferences I have been to with a good mix of presentations, Q&A and highly interactive workshops. The Summit was also the perfect size—not too big and not too small. Large enough to have a diverse set of attendees but small enough that you had the opportunity to cross paths with many others.”
Clinician Researcher
“… two brilliant days at the National Rare Disease Summit in Brisbane, coordinated by the incredible Rare Voices Australia, with so many passionate contributions from the whole sector, patient groups, government, clinicians, researchers, industry. The meeting was a stark reminder that so much of the care and progress for people with rare diseases comes from ridiculously dedicated people who push no matter what, including fighting against inflexible and outdated systems.”
Clinician/Researcher
“Felt so honoured to be on a panel and it has already been so beneficial to us so thank you again so very much for the opportunity. Enjoy some downtime after what was a brilliant few days.”
RVA Partner (rare disease group/organisation representative)
“Thank you for a wonderful day yesterday and congratulations on a fantastic event.”
RVA Partner (rare disease group/organisation representative)
Parliamentary Events
RVA typically facilitates one Parliamentary Event annually themed around Rare Disease Day, which is marked on the last day of February each year. A key aim of Rare Disease Day is to raise awareness among policymakers.
Parliamentary Events provide key rare disease stakeholders with the opportunity to meet and speak with parliamentarians to help them gain a better understanding and awareness about rare diseases. For parliamentarians, these events enable them to meet with their local constituents and learn more about the ongoing collaborative implementation of the Action Plan. The Action Plan is the first nationally coordinated effort to address rare disease in Australia.
Parliamentary Events are hosted by the Parliamentary Friends of Australians Living with Rare Diseases, which is Co-Chaired in the 48th Parliament by:
- Senator Wendy Askew, Senator for Tasmania
- Dr Mike Freelander MP, Member for Macarthur
- Dr Monique Ryan MP, Member for Kooyong
About Rare Disease Day
Rare Disease Day is the globally coordinated movement for rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis for people living with a rare disease. Locally, Rare Disease Day is an opportunity to raise awareness and inform policymakers about the issues faced by the Australian rare disease community, with the aim being to achieve the best outcomes for Australians living with a rare disease.
