Children with rare malformations and their families often experience gaps in care
at the interface between inpatient and outpatient sectors. They require reliable and
coordinated care–extending beyond the hospital. The article highlights areas of overlap
with pediatric and adolescent medicine in private practice. It also illustrates possible
support systems and a best practice example. For the best possible outcome, itʼs essential
to ensure multidisciplinary care across all sectors and at all interfaces.
Keywords
oesophageal atresia/esophageal atresia - rare disease - patient support - discharge
management - holistic follow-up
