Rare Disease Disability Virtual Kitchen Table Peer Support Sessions provide a safe online space for people living with rare disease disability to talk and connect with others in small groups.
Who are these Sessons for?
These sessions are open to people:
- Living with rare disease disability.
- Caring for someone living with rare disease disability.
- Who are not in a formal role in any RVA Partner group/organisation*.
The sessions are especially helpful if you are living with rare disease disability and caregivers and:
- Are looking for community, understanding, and support.
- May not have or are still looking for a condition-specific support group.
- Are newly diagnosed or navigating new challenges.
Everyone is invited to share as much or as little as they feel comfortable with.
Separate sessions are held for:
- People living with rare disease disability.
- Caregivers of people living with rare disease disability.
The sessions will also help to inform the Rare Disease Disability Project.
*Note: If you are an RVA Partner representative, you are welcome to join the Rare Disease Disability Network instead. Email RVA to join: disabilityprojects@rarevoices.org.au
Why join the Sessions
- Connect with people who understand.
- Share and hear real-world experiences and tips.
- A safe judgement-free space where there is no need to explain rare disease basics.
- Feel a stronger sense of belonging.
What participants are saying about the sessions
People living with rare disease disability:
“Open, welcoming, well run.”
“It was great to just share experiences.”
“The ability to connect with others in the same position.”
Caregivers:
“Learning from people with similar lived experience and being able to positively contribute to future resources and programs.”
“The relaxed atmosphere and helpful information that was shared.”
“Connecting with others and hearing their stories. Great tips provided by everyone.”
What happens in the sessions?
Each session focuses on one theme.
Session topics for 2026
- Preparing for natural disasters and emergencies with rare disease disability
- Managing the life admin – tools, tips and strategies
- Coping with change and transitions
- Safely sharing your rare disease disability story
2026 schedule
Wednesday, 11 March 2026
Preparing for natural disasters and emergencies with rare disease disability.
Session for people living with rare disease disability (12pm – 1pm AEDT)
Session for caregivers of people living with rare disease disability (8pm – 9pm AEDT)
Wednesday, 13 May 2026
Managing the life admin – tools, tips and strategies.
Session for people living with rare disease disability (12pm – 1pm AEDT)
Session for caregivers of people living with rare disease disability (8pm – 9pm AEDT)
Wednesday, 5 August 2026
Coping with change and transitions.
Session for people living with rare disease disability (12pm – 1pm AEDT)
Session for caregivers of people living with rare disease disability (8pm – 9pm AEDT)
Wednesday, 2 September 2026
Safely sharing your rare disease disability story.
Session for people living with rare disease disability (12pm – 1pm AEDT)
Session for caregivers of people living with rare disease disability (8pm – 9pm AEDT)
