National Rare Disease Summit

The biennial National Rare Disease Summit (the Summit) brings together the rare disease sector, including people living with a rare disease; governments; key peak bodies; researchers; clinicians; industry; the RVA Board; RVA’s Scientific and Medical Advisory Committee; RVA Ambassadors; and RVA staff. The next Summit will be held in 2026.

2024 National Rare Disease Summit

The 2024 Summit took place on 15 and 16 November 2024 in Brisbane. The Summit theme was, Progress Beyond Policy. See the Summit highlights.

Each Summit has its own unique theme in line with achieving the best outcomes for Australians living with a rare disease. To date, the Summit has been held in 2015, 2018 and virtually in 2021 due to COVID-19. It was originally scheduled to be held in 2020 but was delayed due to the pandemic.

At the 2018 National Rare Disease Summit held in Melbourne, the Minister for Health announced the development of Australia’s first National Rare Disease Framework (later renamed the National Strategic Action Plan for Rare Diseases), to be led by RVA.

A look at the 2024 National Rare Disease Summit

RVA's Chief Executive Officer, Nicole Millis, speaking at the Summit

Senator Wendy Askew: Co-Chair, Parliamentary Friends of Rare Diseases and Senator for Tasmania, speaking at the Summit
Panel discussion at the Summit
Guests networking
Clin/Prof Gareth Baynam asking a question at the Summit
Dr Falak Helwani, RVA's Research and Evaluation Manager speaking at the Summit