The Visual Snow Initiative (VSI) is pleased to share an opportunity for members of the Visual Snow Syndrome (VSS) community in Perth, Western Australia, to contribute directly to future research.
Researchers from the University of Western Australia (UWA) and the Lions Eye Institute are inviting people living with Visual Snow Syndrome to participate in an in-person Micro Community Conversation. This small discussion group will provide participants with the opportunity to share their lived experiences, discuss the challenges of living with VSS, and help guide future research into the condition.
Why Your Voice Matters
Although awareness and research surrounding Visual Snow Syndrome have grown significantly in recent years, there is still much to learn about how the condition affects people’s daily lives. Research is most meaningful when it is informed by the experiences of those living with VSS.
During this community conversation, researchers hope to better understand:
- Which visual symptoms have the greatest impact on daily life.
- Everyday visual tasks that are most challenging for people with VSS.
- What individuals with VSS believe should be prioritized in future research.
- How vision research can better support people living with the condition.
The feedback gathered will help inform a research program investigating how the brain processes visual information in people with Visual Snow Syndrome and may help shape future research priorities.
Event Details
Event: Visual Snow Syndrome Micro Community Conversation
Date: Tuesday, August 18, 2026
Time: 6:00 p.m. – 8:00 p.m.
Location: eZone at The University of Western Australia (UWA), Nedlands, Western Australia
Format: In-person
To encourage meaningful discussion, participation is limited to six attendees.
Who Can Participate?
You may submit an Expression of Interest if you:
- Have been diagnosed with Visual Snow Syndrome (VSS).
- Are 18 years of age or older.
- Live within the Greater Perth area and are able to attend the event in person.
Participants selected to attend will receive an $80 gift card honorarium, and light refreshments will be provided.
What Will Participants Discuss?
The conversation will focus on the lived experience of Visual Snow Syndrome, including topics such as:
- The visual symptoms you experience.
- How VSS affects your daily activities and quality of life.
- Challenges encountered when seeking medical care, diagnosis, or support.
- Your perspectives on current research and future priorities for Visual Snow Syndrome.
Researchers hope these conversations will help identify meaningful ways to:
- Improve understanding of how Visual Snow Syndrome affects vision.
- Support the development of future treatments.
- Identify better ways to measure symptoms and treatment outcomes.
- Increase awareness of Visual Snow Syndrome among healthcare professionals.
Can’t Attend?
If you are unable to participate in person but would still like to be involved in future Visual Snow Syndrome research, you are encouraged to complete the Expression of Interest form and indicate that you would like to be contacted about future research opportunities.
Register Your Interest
If you meet the eligibility requirements and would like to participate, you can submit your Expression of Interest through the official registration form provided by the organizers.
Visual Snow Syndrome – Micro Community Conversation | CCI Program
At the Visual Snow Initiative, we believe that every person living with Visual Snow Syndrome has a voice that can help shape the future of research. Opportunities like this allow researchers to better understand the real-world impact of VSS while ensuring that future studies are guided by the experiences and priorities of the community. We encourage eligible individuals in the Perth area to participate and help advance progress toward greater understanding, improved care, and effective treatments for Visual Snow Syndrome.