Fragile X Canada is honoured to take part in the National Summit on Child Health and Well-Being, hosted by Inspiring Healthy Futures and One Child Every Child (OCEC). This invitation-only event will bring together parents, youth, researchers, and policymakers from across Canada to align research, policy, and lived experience in shaping national priorities for children’s health. Our President and CEO, Karen Kelm, will share insights from the Fragile X community and the rare disease space, helping advance a unified vision for system-level change and family-centered care.

Fragile X Canada was invited to join leading clinicians, researchers, and patient partners at the joint CCMG–CAGC Conference to share the importance of lived experience and the role of health charities in advancing care, support, and research. By bridging science and real-world experience, we continue to strengthen collaboration between families and professionals, ensuring that discoveries translate into meaningful improvements for those living with Fragile X and related conditions.