Discover inspiring and informative stories of individuals living with rare diseases in Canada.
Jessica Head reflects on what EURORDIS’ Data, Ethics and AI training revealed about trust, accountability, and the importance of patient perspectives in shaping responsible rare disease data and AI systems.
Georgina Grahame-King shares her experience of living with reactive hypoglycemia as a teenager and learning to advocate for herself.
Katherine Govier and her daughter Emily Honderich share their dual perspectives on living with and supporting someone with Xia-Gibbs syndrome.
Dr. Manda Roddick’s journey of turning her lived experience with rare and complex conditions into research and advocacy that advances more equitable, person-centered care.
Neil Merovitch’s journey from a young patient navigating the complexities of rare diseases to a passionate advocate and researcher underscores the critical need for authentic patient engagement in healthcare and research.
Daniel Kinchlea, a 10-year-old Canadian rare disease patient, embodies resilience and hope in the face of living with an undifferentiated autoinflammatory condition.
