European Patient Advocacy Group

Our ePAG is made up of patient advocates from across Europe, representing a diverse range of conditions and experiences. They:

• take part in governance (Strategic Board, workstreams, and working groups)
• contribute to the ERN eUROGEN Registry, PROMs, and PREMs
• help develop guidelines, patient information, and training and education (including presenting webinars)
• strengthen connections with our Supporting Partners

A few examples of the impact ePAG representatives have made:

• Revising Orphanet coding for Anorectal Malformations, integrating EU expertise and replacing outdated classifications
• Developing a Patient Empowerment Pathway, a framework that supports patients in moving from isolation to advocacy, building confidence, and participating actively in care and research
• Launching the Penile Cancer Patient Survey, the first survey of its kind in this ultra-rare cancer, gathering responses from patients to improve diagnosis, treatment, and support
• Designing the Rare PREPARE Tool, a pre-appointment questionnaire to strengthen patient-clinician communication and improve referral pathways

These examples show patients as co-creators of ERN eUROGEN’s work, not just as people consulted on it, ensuring that lived experience shapes care and research.

Each year, the ePAG publishes a strategy setting out its priorities for the year ahead, alongside a report on progress against the previous year’s goals.

The most recent document covers the group’s objectives for 2026, including the Rare PREPARE pre-appointment tool, patient input into guideline development for conditions such as bladder pain syndrome and penile cancer, and advocacy for the centralisation of highly specialised care, alongside a full report on what was achieved against the 2025 strategy.

➡️ Download the ERN eUROGEN ePAG Strategy 2026 and Report 2025

We warmly welcome new patient representatives. Support is available to help you get involved, including:

• Training and induction through EURORDIS and our own Welcome Guide
• Mentoring from experienced advocates
• Practical support (travel reimbursement, remote participation options)
• Administrative support from the Coordination Team

➡️ Download the Welcome Guide for New ERN eUROGEN ePAG Representatives
➡️ Download the ERN eUROGEN Rules for Patient Engagement

Finding patient representatives in this medical field can be difficult, so new applications are warmly welcomed. Support is available through EURORDIS training, peer mentoring, and resources to help you take part in ERN activities.

For questions about patient involvement, please contact the ERN eUROGEN Business Support Manager (Jen Tidman) via eurogen@uroweb.org.