Rare Voices Australia (RVA), the national peak body for Australians living with a rare disease, is organising the 2026 National Rare Disease Summit (the Summit).

The Summit brings the sector together to collaborate and advance the shared goal of achieving the best possible health and wellbeing outcomes for Australians living with a rare disease. This work is progressing through the collaborative implementation of the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan).

The Summit theme, Equity: Gaps and Opportunities, invites the sector to examine progress, identify persistent inequities, and explore how existing system strengths can be leveraged to improve equitable access to awareness and education; care and support; and research and data.

Summit attendance is by invitation only to ensure appropriate representation across the sector. The two-day Agenda incorporates a mix of plenary sessions, panel discussions, group discussions and networking opportunities. The Summit also includes a networking evening on Friday, 20 November 2026.

The Summit is best experienced in person to maximise relationship building, interaction and participation. An audio recording of the two-day program will be distributed to delegates post event.