Children with congenital heart disease may require lifelong medical attention from a specialist. Neglected follow-up during the child’s development may lead to serious medical complications. Adequate information about the disease and its implementation can lead to good preventive outcomes. Good prevention outcomes depend on the knowledge and information that children, young people and parents have about their disease. In a representative cross-sectional survey with 596 patients aged 10-30 years, – of course – all patients with heart defects were previously registered in the German national health system. The main measurements included knowledge about the disease, information about the disease, and sources of information about the patients’ personal heart condition. A certain knowledge deficit was indicated regarding the knowledge of the disease and how to live the patient. In three different age levels, patients complained that they had only about 50% of the information they needed to know about their lives, and children compared to young people and adults in several important areas, such as work, career and sports. The sources of information were differentiated according to age and gender, while comparing the severity of the disease, the main source of information depended 71% on the specialist, 58.2% on family and friends, and 37.5% on the Internet. The results of the study strongly suggest that there is a knowledge deficit about the disease itself, suggesting the need for multidisciplinary educational interventions for patients. These interventions should be carried out as early as possible in childhood to help children manage all aspects of their health to ensure a smooth transition to a normal life.