When a child is living with a rare rheumatic disease, answers often take time. Families may face long diagnostic journeys, unpredictable symptoms, and too few resources designed for their realities. Too often, their experiences remain unseen.
RareTalks is a space created to change that.
Held during Rare Disease Month, this annual virtual event brings together families, youth, and the broader childhood rheumatic disease community to make rare experiences visible—and to remind families that they are not alone. Through shared stories, trusted information, and meaningful connection, RareTalks offers support for every stage of the journey, from first symptoms to long-term care.
This year, RareTalks will feature patient speaker, Kai, and his mom, Amy, who will share their family’s lived experience navigating a rare rheumatic disease called PFAPA (Periodic Fever, Aphthous stomatitis, Pharyngitis, Adenitis). From the challenges of diagnosis and ongoing flares to school, mental health, and advocacy, their story reflects what so many families face when answers take time.
Additional speakers will be announced in the coming weeks.
Join us on Tuesday, February 17, 2026 at 5pm PST | 8pm EST, for an evening of learning, reflection, and connection.
All childhood rheumatic disease types are welcome.
Hosted by C+F’s Family Engagement Coordinator and JA Mom, Marissa Sangers (Woodstock, ON) who will share information about helpful tools and resources, opportunities to stay connected, and ways to get more involved in our community.
