ERN eUROGEN

26/03/2026

EAU26 in London was a brilliant opportunity to showcase ERN eUROGEN's work — with our Thematic Session, European Patient Advocacy Group (ePAG) presentations, roundtables, and an Information Desk in the Patient Advocacy Plaza, all bringing rare disease expertise to the heart of the urology community.

Congratulations also to Rob Cornes, Orchid - Fighting Male Cancer Nurse and member of our ePAG, who was awarded the EAU Patient Advocacy Medal of Excellence at the Opening Ceremony 🏅

We are deeply grateful to the European Association of Urology, our Supporting Partner, and to the EAU Patient Office and EAU Policy Office for their collaboration in championing patients' voices across the programme.

Read the full report: https://eurogen-ern.eu/ern-eurogen-at-eau26-bringing-rare-disease-expertise-to-london/


European Commission Jardin Joint Action European Association of Urology Nurses (EAUN) Aici - Associazione Italiana Cistite Interstiziale AIMAR - Associazione Italiana Malformazioni Anorettali Max's Trust

The annual European Association of Urology (EAU) congress held this year in London from 13 to 16 March provided ERN eUROGEN with an outstanding platform to share our work, connect with the wider urology community, and demonstrate the vital role that European Reference Networks play in improving care...

24/03/2026

ERN eUROGEN supports the Declaration on a European Innovation and Care Ecosystem for Rare and Complex Diseases, launched at the first High-Level Meeting on Rare and Complex Diseases (HLM Rare) in December 2025.

❤️ Your endorsement truly matters — for the future of the ERNs and for everyone living with a rare or complex condition.

By signing, you will help:

✅ Advance a comprehensive EU Action Plan on Rare Diseases
✅ Ensure long-term sustainability and recognition of ERNs
✅ Strengthen our collective voice to influence EU policy and funding

✍️ Sign the Declaration here: https://wppsign.eu2.adobesign.com/public/esignWidget?wid=CBFCIBAA3AAABLblqZhAEhyHEzWoWt7eIpkFocvpSdGEFDbkSFlsZdA8bwNgHOfeWCctOQ0KeRt3dGqWXz50*

Please indicate ERN eUROGEN as the ERN you collaborate with.

🔁 Please share this link with colleagues who contribute to, or benefit from, the work of ERNs such as ERN eUROGEN.

20/03/2026

🌍 Today is World Anorectal Malformation (ARM) Day — and for the first time, 14 countries are officially recognising this global milestone together.

ERN eUROGEN joins the worldwide ARM community in marking this important day. We know that behind every diagnosis is a patient and family navigating complex, lifelong care — and that access to reliable information makes a real difference.

That's why we want to make sure our ARM resources reach as many people as possible:

🔹 Combined Clinical Practice Guideline – the full care pathway in one consolidated document
🔹 Patient Journey – in full-text, brochure, and audio formats
🔹 Sexual Support Website – in collaboration with ERNICA, in English and Dutch

👉 Download the Guideline: https://eurogen-ern.eu/our-work/guidelines/
👉 Explore the Patient Information: https://eurogen-ern.eu/our-work/patient-information/
👉 Visit: https://sexualsupport.eu

Today, we raise our voices for everyone affected by ARM. Together, we are stronger. 💙

European Commission Jardin Joint Action ESPU - European Society for Paediatric Urology ESPU-Nurses AIMAR - Associazione Italiana Malformazioni Anorettali Max's Trust

15/03/2026

This afternoon at — join us for the ERN eUROGEN Thematic Session: "Update on Rare & Complex Urology."

📅 Sunday 15 March | 15:30–17:00
📍 Blue Area, Victoria 6

Hear from clinicians across our three workstreams, plus presentations from our European Patient Advocacy Group (ePAG) on pe**le cancer and anorectal malformation. Chaired by Prof. Peter Mulders and Michelle Battye.

All congress attendees are welcome — see you there!

European Commission Jardin Joint Action European Association of Urology European Association of Urology Nurses (EAUN)

14/03/2026

Day 2 of and the ERN eUROGEN Information Desk is open! 👋

📍 Patient Advocacy Plaza, Orange Area, Level 0 (near eURO Auditorium 1)

If you haven't had a chance to stop by yet, today is a great opportunity to meet the Coordination Team and patient representatives, ask questions, and find out more about how ERN eUROGEN supports patients with rare and complex uro-recto-genital diseases.

See you there!

European Commission Jardin Joint Action European Association of Urology European Association of Urology Nurses (EAUN)

13/03/2026

At this week? Come and visit the ERN eUROGEN Information Desk! 👋

📍 Patient Advocacy Plaza, Orange Area, Level 0 (near eURO Auditorium 1)

Meet the Coordination Team and patient representatives, learn more about our work supporting patients with rare and complex uro-recto-genital diseases, and find out how ERN eUROGEN can help.

We'll be there throughout the congress — drop by anytime!


European Commission Jardin Joint Action
European Association of Urology European Association of Urology Nurses (EAUN)

12/03/2026

🇺🇦 ERN eUROGEN Paediatric Urology Webinar Series for Ukraine: Bladder Exstrophy / Серія вебінарів з дитячої урології для України: Екстрофія сечового міхура

🗓 Thursday 19 March / Четвер, 19 березня 18:00 CET / 19:00 EET

🎙 Speakers: Prof. Alaa El-Ghoneimi, Prof. Marc-David Leclair, Assoc. Prof. Gundela Holmndahl

👉 Register here / Реєстрація: https://tinyurl.com/eurogen19mar26

This webinar is part of ERN eUROGEN’s initiative to support collaboration and knowledge sharing with Ukrainian clinicians in paediatric urology. This session focuses on Bladder Exstrophy, a rare and complex congenital condition affecting the urinary system.

Цей вебінар є частиною ініціативи ERN eUROGEN щодо підтримки співпраці та обміну знаннями з українськими клініцистами в галузі дитячої урології. Ця сесія зосереджена на екстрофії сечового міхура, рідкісному та складному вродженому стані, що вражає сечовидільну систему.

European Commission Jardin Joint Action

11/03/2026

🚨 TONIGHT! 🤖 Robotic Surgery in Functional & Reconstructive Urology: Shaping Tomorrow’s Standard? Join the next ERN eUROGEN webinar exploring the role of robotics in complex urological procedures.

🗓 Wednesday 11 March
⏰ 18:00–19:00 CET
👉 Register here: https://tinyurl.com/eurogen11mar26

🎙 Speakers
• Dr Tim Brits – Antwerp University Hospital
• Dr Donald Vaganée – Clinique Saint-Jean & Cliniques universitaires Saint-Luc, Brussels

This webinar will examine the evidence for robotic approaches in procedures such as sacrocolpopexy, vesicovaginal fistula repair, ureteral reconstruction, and neuro-urological surgery, and discuss whether robotics represents incremental innovation or the future standard of care.

European Commission Jardin Joint Action European Association of Urology

09/03/2026

🤖 Robotic Surgery in Functional & Reconstructive Urology: Shaping Tomorrow’s Standard? Join the next ERN eUROGEN webinar exploring the role of robotics in complex urological procedures.

🗓 Wednesday 11 March
⏰ 18:00–19:00 CET
👉 Register here: https://tinyurl.com/eurogen11mar26

🎙 Speakers
• Dr Tim Brits – Antwerp University Hospital
• Dr Donald Vaganée – Clinique Saint-Jean & Cliniques universitaires Saint-Luc, Brussels

This webinar will examine the evidence for robotic approaches in procedures such as sacrocolpopexy, vesicovaginal fistula repair, ureteral reconstruction, and neuro-urological surgery, and discuss whether robotics represents incremental innovation or the future standard of care.

European Commission Jardin Joint Action European Association of Urology

09/03/2026

We are now accepting poster abstract submissions for until Friday 13 March! 🏃

If you ran out of time to prepare and submit your 300-word poster abstract, this is your chance! We encourage patient groups, academics, healthcare professionals, and any other interested parties having conducted research or studies on rare diseases or public health to send a submission.

Accepted abstracts will be developed into full posters and featured in the conference’s virtual showcase. Accepted authors attending the in-person conference will also have the opportunity to bring and display their poster in Prague. Additionally, one representing author per accepted abstract will receive a 20% registration discount! 👀

Don’t miss out, submit your poster abstract now 👇
https://go.eurordis.org/ecrd-posters-2026

08/03/2026

Behind every statistic on urinary incontinence is a woman navigating daily life with courage.

Across Europe, 1 in 5 women experiences UI, often after childbirth, during menopause, or for many years beyond. Yet continence health remains one of the most under‑researched and under‑prioritised areas in women’s health.

This , let’s break the silence.

Let’s recognise the millions of women whose experiences are overlooked and commit to building health systems that finally see them, support them, and invest in their wellbeing.

Learn more at: https://uroweb.org/an-urge-to-act

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