ERNICA clinicians and patient representatives within the esophageal diseases working group have been developing a 'patient journey' for esophageal atresia. This project is led by patient representatives from ‘EAT’, the international federation of esophageal atresia support groups.
The project sets out to describe the patient's journey at 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.
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The development of a Hirschsprung disease 'Patient Journey' is also currently underway.