Rare Voices Australia (RVA) hosts the biennial National Rare Disease Summit (the Summit). Given the COVID-19 situation remains unstable throughout Australia, particularly in New South Wales where this year’s Summit was scheduled to take place, the difficult but necessary decision has been made to host a virtual invite-only event on Friday 12 November instead of proceeding with the Summit. All RVA Partners will be 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.