National Rare Disease Summit

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.

2022 National Rare Disease Summit

Planning is well underway for the 2022 Summit and Gala Dinner to celebrate RVA’s 10th anniversary! The theme of the Summit is, From Vision to Action: Celebrating 10 Years of Rare Disease Advocacy and Shaping the Next Decade.

The event will take place on Friday 11 and Saturday 12 November 2022 in Sydney and virtually. The Summit is invite-only and Save the Date emails have been distributed. All RVA Partners will be invited. RVA will send out formal invites shortly.

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.

A look at the 2018 National Rare Disease Summit