The Rare Disease Disability Network (RDDN) is a Rare Voices Australia (RVA) led peer support and capacity building network for rare disease community-led groups/organisations and invited sector stakeholders. It will help to inform the Rare Disease Disability Project.
The RDDN is open to leaders from RVA Partner groups/organisations and other invited sector stakeholders. The group meets virtually 5 times a year and in person once a year. RVA hosted an invite-only RDDN Showcase in December 2025 in Brisbane. Download the RDDN Terms of Reference (PDF).
Members of the General Public
If you are a member of the general public living with rare disease disability or caring for people living with rare disease disability, you are welcome to join the Rare Disease Disability Virtual Kitchen Table Peer Support Sessions. Learn more about these sessions at this web page.
Rare Disease Disability Network Showcase
RVA will be hosting the next National Rare Disease Summit on 20 and 21 November 2026 in Melbourne. The 2026 Rare Disease Disability Network Showcase will take place on 19 November at the same venue. Attendance at both events is by invitation only to ensure appropriate representation across the sector. We will share more information with those invited as soon as possible. For now, please save these dates in your calendar if you anticipate receiving an invitation to either or both events. RVA will distribute save the date emails to those invited soon.
