Patient Information

This page brings together a wide range of patient information developed by ERN eUROGEN and our partners. The resources are designed to help people living with rare urogenital conditions — and their families and carers — better understand their condition and the care available.

Our materials include:

Patient Journeys, which outline the typical care pathway and reflect the real-life needs of patients.
Brochures and information sheets, offering concise guidance in accessible formats.
Audio versions, videos, websites, and animations, making information easier to access and share.

All resources are produced together with patients and clinicians to ensure accuracy, clarity, and patient-centred care.

All Workstreams

Registry Patient Information Animation
An animation explaining the purpose of patient registries.
👉 Watch the animation

Patient Empowerment: A Journey from Isolation to Advocacy
Flyer developed in collaboration with TOFS, Max’s Trust, and VACTERL Association UK.
👉 Download flyer (PDF)
👉 Read about the development of this work

Workstream 1: Rare Congenital Uro-Recto-Genital Anomalies (Paediatrics)

1.1 Complex genital reconstructions (DSDs)

Differences of Sex Development (DSD) Animation
An animation explaining DSD for patients and families (in collaboration with Erasmus MC).
👉 Watch the animation

1.2 Bladder exstrophy/epispadias

Bladder Exstrophy Patient Journey
Patient journey developed with EURORDIS to support families and carers.
👉 Download the Patient Journey (PDF)

1.3 Rare urological stone and kidney diseases

Duplex Congenital Malformations – Patient Information
Information sheets available in multiple languages (in collaboration with the EAU).
👉 Read in English | Read in French | Read in German | Read in Spanish

Duplex Congenital Malformations – Patient Information Animations
Animated explanations in English and Spanish (in collaboration with the EAU).
👉 Watch English animation | Watch Spanish animation

1.4 Non-syndromic urogenital tract malformation

Spina Bifida Patient Journey
Patient journey developed with EURORDIS for individuals and families.
👉 Download the Patient Journey (PDF)

1.7 Urorectal/anorectal malformations

Anorectal Malformation Patient Journey (Full Text Version)
A comprehensive overview of the ARM patient journey.
👉 Download full text (PDF)

Anorectal Malformation Patient Journey (Short Brochure Version)
An illustrated summary brochure for quick reference.
👉 Download short version (PDF)

Anorectal Malformation Patient Journey (Abridged Audio Version)
Listen to the abridged patient journey in audio format.
👉 Play audio online | Download audio (MP3)

International ARM Patient Organisations
A list of international patient organisations for anorectal malformations and Hirschprung’s disease.
👉 Download list (PDF)

We warmly thank ERN eUROGEN European Patient Advocacy Group (ePAG) representatives Nicole Schwarzer (SoMA e.V.), Dalia Aminoff (AIMAR), and Kate Tyler (EAT / Max’s Trust / TOFS / VACTERL Association UK) for their invaluable contributions in developing these materials.

Anorectal Malformations & Hirschsprung’s Disease Sexual Support Website
Support website in English and Dutch (in collaboration with ERN ERNICA).
👉 Visit website

Workstream 2: Functional Urogenital Conditions Requiring Highly Specialised Surgery (Adults)

2.5 Interstitial Cystitis

Interstitial Cystitis Patient Journey
Patient journey developed with EURORDIS to support adults living with interstitial cystitis.
👉 Download the Patient Journey (PDF)

Workstream 3: Rare Urogenital Tumours

3.1 Penile Cancer

Penile Cancer Patient Information
Information for patients, developed with the EAU and Orchid.
👉 Read on EAUPatient

Penile Cancer Animations
Patient information animations in English and Spanish (in collaboration with the EAU).
👉 Watch English animation | Watch Spanish animation

Penile Cancer Awareness Video
Awareness video produced with Orchid.
👉 Watch the video

Penile Cancer Patient Journey
Comprehensive patient journey developed with EURORDIS.
👉 Download the Patient Journey (PDF)

3.2 Testicular Cancer

Testicular Cancer Patient Information
Information for patients, developed with the EAU and Orchid.
👉 Read on EAUPatient