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About Long Covid Families

Long Covid Families is a U.S. nonprofit dedicated to accelerating pediatric research and ensuring access to essential medical care and education for children living with Long COVID and related conditions. Nearly six million children in the United States have been affected, making it the most common chronic illness in kids today. Families are navigating life-changing symptoms without clear answers, adequate care, or dependable support. That is why we exist. We bring patient stories together with research to build change that endures. Parents describe babies who once smiled and reached for toys now missing milestones, and toddlers who cry through the night and refuse food they once loved. Children watch from the sidelines because running leaves them gasping, and teenagers have lost entire school years to illness and uncertainty. These stories show the urgency. Strong science drives the change. Together they shape research priorities, open doors to medical care, and protect every child’s right to a safe and supportive education. Our advocacy works. We have helped shape federal legislation, educated doctors on pediatric Long COVID, and created resources to support access to medical care that have been published in JAMA Pediatrics. We have partnered with the NIH RECOVER initiative to develop resources for families, contributed to shaping the national research agenda for pediatric Long COVID, and continue to press for the structural changes needed to ensure care for every child. As the trusted voice for families, we sit at the table with policymakers, researchers, and healthcare leaders to build a coordinated national response. Every conversation is grounded in lived expertise and guided by data. You can help ensure that every child with Long COVID has the care, opportunity, and future they deserve. Your support makes that future possible.

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