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.
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 Marissa Sangers, a parent to a child living with enthesitis-related arthritis and Family Engagement Coordinator at Cassie + Friends. After more than a year seeking answers before receiving her daughters diagnosis—and while continuing to navigate new and ongoing medical questions for symptoms she experiences—Marissa is all too familiar with the uncertainty, advocacy, and emotional toll that often define the rare and under-recognized disease journey. This lived experience fuels her commitment to learning alongside families, amplifying lived experience, and helping create spaces where families feel seen, believed, and supported.
Amy and Kai are a mother-son duo from British Columbia who have spent years navigating life alongside PFAPA. As Kai has grown from childhood into young adulthood, their family has balanced school, work, and chronic illness while searching for answers, managing uncertainty, and learning how to advocate within complex medical systems. Through sharing their experience, Amy and Kai hope to raise awareness, reduce isolation, and help other families feel less alone on a similar journey.
Kelly L. Brown, PhD, is an Associate Professor in the Department of Pediatrics at the University of British Columbia and a Scientific Lead in the Division of Rheumatology at the BC Children’s Hospital Research Institute. Kelly’s research focuses on understanding why harmful inflammation develops in children with rheumatic diseases, with particular attention to vasculitis and PFAPA. By studying how these conditions begin and change over time, Kelly’s work aims to support more personalized, evidence-based care and improve how physicians assess disease and predict outcomes. Kelly is also deeply committed to education, equity, and preparing the next generation of scientists to translate research into meaningful improvements in patient care.
Dr. Liane Heale completed her medical training at the University of Western Ontario and her pediatric residency and pediatric rheumatology subspecialty training at the University of Toronto. She joined the Division of Pediatric Rheumatology at McMaster Children’s Hospital in 2018. Her main research interests are examining and promoting physical activity and healthy lifestyle choices to enhance the lives of children with rheumatic disease and developing and implementing patient registries to better understand systemic autoinflammatory diseases.
