Eurordis - Rare Disease Europe

Patient Journeys are service improvement tools that capture the natural history of a rare condition and the needs of patients through the day-to-day experiences and life-lens of people living with a condition.

Patient Journeys are a structured method to patient representatives active in the ERNs to engage with their communities to identify common needs for each rare condition and within the Networks these they are used to guide the Networks’ actions to meet these needs.

This Guide has been created to provide a step-be-step guidance, as well as practice tips and tools to support patient representatives active in the ERNs to develop a Patient Journey for their respective rare conditions.

EURORDIS, the patient representatives and clinicians involved in the ERNs are actively working to implement the Patient Journey approach across all rare conditions, empowering patients to inform care pathways based on their own lived experiences.