National Rare Disease Summit

Rare Voices Australia (RVA) hosts the biennial National Rare Disease Summit. The next Summit will be held on Friday 12 and Saturday 13 November 2021 at Novotel Sydney Brighton Beach. RVA will be distributing save the date emails shortly. Participation is by invite only. All RVA Partners are invited.

The Summit brings together all 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 and 2018, with the Summit scheduled for 2020 now postponed to 2021 due to the COVID-19 pandemic.

At the 2018 National Rare Disease Summit held in Melbourne, the Minister for Health, the Hon Greg Hunt MP, 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 2018 National Rare Disease Summit