Patient Information

Patient Information

This page brings together patient information developed by ERN eUROGEN and our partners to help people living with rare uro-recto-genital diseases and complex conditions, as well as their families and carers, better understand their conditions and the care available. All resources are produced in collaboration with patients and clinicians to ensure they are accurate, clear, and patient-centred.

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

Alongside the resources below, you may also find these useful:

General (All Workstreams)

ERN eUROGEN patient registry

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

Patient empowerment

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

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

Anorectal malformations (EA 1.7)

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

Bladder exstrophy/epispadias (EA 1.2)

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

Differences of sex development (EA 1.1)

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

Rare urological stone and kidney diseases (EA 1.3)

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

Spina bifida (non-syndromic urogenital tract malformation) (EA 1.4)

Spina Bifida Patient Journey
Patient journey developed by ERN ITHACA with EURORDIS for individuals and families.
➡️ Download the Patient Journey (PDF)

ESPU Parent and Patient Information System

We also recommend the ESPU Parent and Patient Information System, an online e-book containing information on the most common genitourinary disorders in children.

➡️ ESPU Parent and Patient Information System

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

Bladder pain syndrome/interstitial cystitis (EA 2.5)

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

Oncology: Rare Urogenital Tumours (Workstream 3)

Penile cancer (EA 3.1)

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 (developed with the EAU and Orchid).
➡️ 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)

Testicular cancer (EA 3.2)

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