Patient Information

Patient Information

Patient Journeys capture the natural history of a rare condition and the needs of patients through their day-to-day experiences. EURORDIS has published a guide to developing patient journeys and templates to ensure uniformity of journeys across the 24 ERNs. Other materials, such as websites, videos, and animations, also help to inform patients and their families.

ERN eUROGEN has produced the following patient information:

Workstream 1:

Workstream 2:

Workstream 3:

ERN eUROGEN Registry: