The Patient Journey for Rectosigmoid Hirschsprung’s Disease promotes better understanding of this rare congenital disease and aims to support communication between clinicians, parents and patients. It gives an overview of symptoms, diagnosis and treatment and describes the crucial stages of life with the disease.
The document lays out the steps of medical treatment as well as ideal support scenarios for patients and their families. The Patient Journey is written in understandable language for people without a medical background and includes links to further information and support. It should be handed out to all patients and families with Hirschsprung's Disease.
The HSCR Patient Journey is based on the 2020 ERNICA Guidelines for Rectosigmoid Hirschsprung’s Disease and the experience of the patient community. It was developed by a working group including clinicians with a multidisciplinary background and patient representatives from various European countries.
