What will the sessions cover?

Each Listening Lab will focus on experiences within primary care, including:

• Recognition of symptoms and concerns
• Access to diagnosis and assessment pathways
• Coordination of referrals to specialists and services
• Ongoing care, follow-up, and support
• Managing daily life and quality of life needs

Participants will be invited to share their perspectives in a structured, facilitated discussion.

About the Model of Care Collaboration

The Listening Labs are part of a broader research collaboration to develop a new and improved Model of Care for EDS and HSD. This research program is focused on improving how healthcare systems respond to patient needs. It is not a referral program and does not direct individuals to any specific hospital or provider.

The aim is to support better systems of care in the future. Learn more about the Model of Care program here.

What to expect

• A live, facilitated online session
• Opportunities to share your experiences and perspectives
• Discussion with others navigating similar challenges
• A respectful, structured environment focused on listening and learning

The Listening Labs are delivered in webinar format. Participants are not required to turn on their camera, speak, or actively participate during the session. There are several ways to contribute, including written responses during registration, live polls and activities, Q&A through Slido, and discussion boards in the Whova app. Participants are welcome to engage in whatever way feels most comfortable for them.

All sessions will be recorded, and participants will have on-demand access following the event.

Stay connected

Participants will have access to a shared discussion space through the Whova app to connect with others and engage during the Listening Lab. Participants will also receive updates on how this work is progressing and future opportunities to contribute via email.

Register Early

Registration will remain open until the day of each live webinar. However, we encourage you to register as early as possible.

Early registration gives our team time to review the experiences, priorities, and questions shared through the registration form so they can help shape the session content and discussion.

Responses received closer to the event may not be able to be integrated into the live session itself, though they will still be included in the wider insights and data used to inform the Model of Care collaboration.