Patients & Patient Partnership

Patients are at the heart of ERN eUROGEN. A fundamental principle of all European Reference Networks is that patients actively participate as key partners in their care. Through our European Patient Advocacy Group (ePAG), people with lived experience and patient organisation representatives work as equal partners alongside clinicians and researchers. Together, they help set priorities, shape decisions, and improve outcomes for those with rare and complex uro-recto-genital conditions. Their input drives our strategy, guidelines, registries, training, and research, ensuring the network remains truly patient-centred.

About The ERN eUROGEN ePAG & Their Impact

Our ePAG is comprised of passionate 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

Specific examples of a few ways ePAG representatives have made a significant impact include:

Revising Orphanet coding for Anorectal Malformations, integrating EU expertise and replacing outdated classifications.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 demonstrate how patients are not only consulted but also co-creators of ERN eUROGEN’s work, ensuring that those with lived experience shape care and research.

👉 Download the ERN eUROGEN ePAG Strategy 2025

Meet The ePAG Members

John Osborne (Chair)

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

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. Represents Workstream 1 (EA 1.7 Anorectal malformations).

Kate Tyler

Trustee of TOFS (UK) and lead for the Adult TOF Working Group. Represents Workstream 1 (EA 1.7 Anorectal malformations) and Workstream 2 (EA 2.6 Adult reconstructive surgery).

Miriam Wilms

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

Claire Harkin

Trustee and Research Coordinator of the Klinefelter’s Syndrome Association (UK). Represents Workstream 1 (EA 1.1 Complex genital reconstructions/DSDs).

Lieke Janssen

Representative of De patiëntenvereniging voor blaasextrofie Nederland (Netherlands). Representative for Workstream 1 (EA 1.2 Bladder exstrophy/epispadias).

Anna De Santis

Board member of Associazione Italiana Cistite Interstitiale (AICI) (Italy), supporting patients with interstitial cystitis. Represents Workstream 2 (EA 2.5 Interstitial cystitis).

Kenneth Manzie

Independent ePAG advocate endorsed by Orchid (UK). Represents Workstream 3 (EA 3.1 Penile cancer).

Robert Cornes

Orchid Male Cancer Information Nurse (UK). Represents Workstream 3 (EA 3.1 Penile Cancer and EA 3.2 Testicular Cancer).

Frans Baan

Independent ePAG advocate from the Netherlands. Represents Workstream 3 (Upper Urothelial Tract Cancer).

Support for ePAG Participation

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

Training & 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

Resources for Patients & Advocates

We provide tools and information to help ePAG members and patient communities:

Specific details on each Expertise Area we cover
Clinical Practice Guidelines and Clinical Decision Support Tools
Patient information, including journeys, brochures, flyers, and videos
Webinars and other educational resources

Our Commitment to Patient Partnership

ERN eUROGEN is committed to the EURORDIS Patient Partnership Framework for ERNs. We believe that patients and clinicians are stronger when working together, and we embed this principle across all our activities.

Transparency – sharing information and decisions openly
Collaboration – involving patients through shared leadership at every stage of our work
Impact – ensuring patient input influences outcomes
Inclusivity – welcoming representatives from across Europe and supporting participation through training, translation, and accessibility measures

We assess our collaboration through the Patient Partnership in ERNs surveys, gathering feedback from both ePAG members and the leadership team. This ensures that we continue to learn, celebrate successes, and address challenges together. Results from the Patient Partnership Surveys will be shared here.

Get Involved / Contact Us

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