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This bill renews federal funding and activities for the Centers for Disease Control and Prevention's congenital heart disease research, surveillance, and awareness program through 2029, extending an authorization that had been set to expire in 2024. It requires the Secretary of Health and Human Services to convene a workshop, within one year of enactment, bringing together patient advocates, health care providers, researchers, insurers, and federal agencies like the CDC, NIH, and HRSA to identify research gaps and assess the healthcare workforce available to treat adults living with congenital heart disease. The bill specifically focuses on the lifelong needs of congenital heart disease patients, including long-term health outcomes, mental health, and quality of life, recognizing that many patients now survive into adulthood and require ongoing specialized care. Within three years of enactment, the Secretary must report to relevant congressional committees on findings and recommendations for advancing research and addressing shortages of medical providers trained to treat adult congenital heart disease patients. This legislation primarily affects patients with congenital heart disease, their families, healthcare providers who treat them, and researchers studying the condition, aiming to improve care coordination and address gaps as this patient population increasingly survives into adulthood.

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