Patient Journeys
ERNICA patient representatives and clinicians have collaborated to develop patient journeys, carefully considering the experiences of the patient community.
A patient journey describes a number of key stages in the patient's life from possible pre-natal diagnosis to adulthood, identifying key issues and relevant good practice at each stage.
A Patient Journey promotes better understanding of a rare congenital disease and aims to support communication between clinicians, parents and patients. It gives an overview of symptoms, diagnosis and treatment and describes a number of key stages in the patient's life from possible pre-natal diagnosis to adulthood, identifying key issues and relevant good practice at each stage. 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.