Patient Information

• Expertise
• Workstream 1
• Workstream 2
• Workstream 3
• 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:

ERN eUROGEN Registry:

• Registry Patient Information Animation

Workstream 1:

• Anorectal Malformation Patient Journey
• Anorectal Malformations & Hirschsprung’s Disease Sexual Support Website in English and Dutch (in collaboration with ERN ERNICA)
• Bladder Exstrophy Patient Journey (in collaboration with EURORDIS)
• Differences of Sex Development Patient Information Animation (in collaboration with ErasmusMC)
• Duplex Congenital Malformations of the Urinary Tract Patient Information in English, French, German, and Spanish (in collaboration with the EAU)
• Duplex Congenital Malformations of the Urinary Tract Patient Information Animations in English and Spanish (in collaboration with the EAU)
• Spina Bifida Patient Journey (in collaboration with EURORDIS)

Workstream 2:

• Interstitial Cystitis Patient Journey (in collaboration with EURORDIS)

Workstream 3:

• Penile Cancer Patient Information (in collaboration with the EAU and Orchid)
• Penile Cancer Patient Information Animations in English and Spanish (in collaboration with the EAU)
• Penile Cancer Awareness Video (in collaboration with Orchid)
• Penile Cancer Patient Journey (in collaboration with EURORDIS)
• Testicular Cancer Patient Information (in collaboration with the EAU and Orchid)