Fragile X Canada is honoured to participate in the upcoming National Summit on Child Health and Well-Being, hosted by Inspiring Healthy Futures. This invitation-only national gathering will bring together youth, parents, researchers, policymakers, and leaders from across Canada to advance meaningful, system-level change for children and youth.

The Summit will:

• Launch and explore key findings from the UNICEF Report Card (May 2025).

• Examine how research, policy, and lived experience can align to shape national priorities.

• Identify systemic barriers and actionable solutions for child and youth well-being.

• Co-create a shared vision and roadmap for transformational change.

Our President and CEO, Karen Kelm, was invited on behalf of Dr. Marshall at the University of Calgary and One Child Every Child to bring forward the perspective of families impacted by rare diseases and neurodevelopmental conditions. Karen’s experience as both a parent and leader within the Fragile X community offers valuable insight into how coordinated systems of care can improve health, support, and inclusion across the lifespan.

The event will also include a Parliamentary Child Health Caucus Breakfast and a National Networking Reception, providing opportunities to strengthen partnerships and elevate the voices of families and organizations working toward a healthier future for all children in Canada.