Sisters by Heart

Sisters by Heart is a national, volunteer-led nonprofit dedicated to empowering the single ventricle community. Founded by parents and now powered by both parents and patients, our organization provides critical support, trusted education, and opportunities for connection across the lifespan, from diagnosis and beyond. We are committed to ensuring that no patient or family faces this complex journey alone. Through our care packages, peer support programs, and educational tools, we help families and individuals navigate each stage of care with confidence and community. In addition to direct support, Sisters by Heart actively partners with leading research and quality improvement initiatives, including the Fontan Outcomes Network and NPC-QIC to advance patient-centered outcomes and elevate lived experience as a vital part of improving outcomes. By fostering collaboration, sharing resources, and championing family and patient engagement, we are shaping a stronger, more informed future for everyone living with single ventricle heart disease.