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• Revising Orphanet coding for Anorectal Malformations, integrating EU expertise and replacing outdated classifications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.

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👉 Download the ERN eUROGEN ePAG Strategy 2025
👉 Download the ERN eUROGEN ePAG Report 2025
👉 Download the ERN eUROGEN ePAG Strategy 2026

John Osborne (Chair)

Independent ePAG Advocate endorsed by Orchid, the UK’s male cancer charity. Chair of the ePAG and representative for penile cancer (Workstream 3, Expertise Area 3.1).

Dalia Aminoff

Founder and President of Associazione Italiana per le Malformazioni Anorettali (AIMAR, Italian Association for Anorectal Malformations) and active in the ARM-Net Consortium. Representative for anorectal malformations (Workstream 1, Expertise Area 1.7).

Kate Tyler

Trustee of TOFS (UK) and lead for the Adult TOF Working Group. Representative for anorectal malformations (Workstream 1, Expertise Area 1.7) and adult reconstructive surgery (Workstream 2, Expertise Area 2.6).

Miriam Wilms

Representative of SoMA e.V. (Germany), a patient organisation for anorectal malformation, Hirschsprung’s disease, and cloacal exstrophy. Representative for anorectal malformations (Workstream 1, Expertise Area 1.7).

Claire Harkin

Trustee and Research Coordinator of the Klinefelter’s Syndrome Association (UK). Representative for complex genital reconstructions/DSDs (Workstream 1, Expertise Area 1.1) and male fertility (Workstream 2, Expertise Area 2.8).

Lieke Janssen

Representative of De patiëntenvereniging voor blaasextrofie Nederland (Netherlands). Representative for bladder exstrophy/epispadias (Workstream 1, Expertise Area 1.2).

Anna De Santis

Board member of Associazione Italiana Cistite Interstitiale (AICI) (Italy), supporting patients with interstitial cystitis. Represents bladder pain syndrome/interstitial cystitis (Workstream 2, Expertise Area 2.5).

Robert Cornes

Orchid Male Cancer Information Nurse (UK). Representative for penile cancer and testicular cancer (Workstream 3, Expertise Areas 3.1 and 3.2).

Frans Baan

Independent ePAG advocate from the Netherlands. Representative for upper tract urothelial carcinoma (Workstream 3).

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.