Rare Voices Australia (RVA) hosts the biennial National Rare Disease Summit (the Summit). Given the COVID-19 situation remained unstable throughout Australia in 2021, the decision was made to host a Virtual National Rare Disease Summit (the Virtual Summit) instead. Read a recap of the Virtual Summit here.
The Summit brings together key stakeholders in the rare disease sector: rare disease support organisation leaders, people living with a rare disease, governments, key peak bodies, clinicians, researchers and the pharmaceutical industry. 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.