hrp0098rfc5.1 | Growth and Syndromes | ESPE2024

About caring for patients and understanding their pathways: 10 years of ‘the rotterdam centre for adults with rare genetic syndromes’

Goos Jacqueline , Davidse Kirsten , Baan Janneke , Pellikaan Karlijn , Rosenberg Anna , Carrasco García Álvaro , Delhanty Patric , Visser Jenny , Graaff Laura

Introduction: Patients with rare genetic syndromes (RGS) often have a combination of hormone deficiencies, organ problems and neurodevelopmental disorders. Due to excellent paediatric care, a growing number of patients is reaching adult age. Transition of these patients to adult health care system has proved to be challenging. Due to the rarity and complexity of their syndromes, patients with RGS often suffer from medical complications due to needless diagnost...