ERN eUROGEN

12/11/2025

👶 World-leading paediatric colorectal and pelvic reconstruction experts meet in Stockholm!

The 16th European Paediatric Colorectal and Pelvic Reconstruction Meeting took place at Karolinska University Hospital from 22–24 October 2025, welcoming over 250 participants from 40 countries.

The programme included a surgical workshop for future paediatric surgeons, supported by ERN eUROGEN, ERNICA, and EUPSA, with practical training and sessions on diagnosis, surgical innovation, and long-term outcomes.

👉 Read the full article from Karolinska University Hospital: https://www.karolinskahospital.com/news/world-leading-pediatric-surgery-meets-at-karolinska

European Commission Jardin Joint Action

Karolinska University Hospital and Karolinska Institutet proudly hosted the internationally acclaimed European Pediatric Colorectal and Pelvic Reconstruction Meeting, where the world’s foremost pediatric surgeons, urologists, gynecologists, and gastroenterologists gathered to explore the latest in...

11/11/2025

🧠 A European Call to Action for Psychosocial Care in Rare Diseases

A new Orphanet Journal of Rare Diseases paper, led by Dr Rosanne Smits, calls for urgent action to improve psychosocial support for people living with rare diseases.

The research stems from the Rare Together Workshop (Nijmegen, 2023), supported by ERN eUROGEN and funded by the European Joint Programme for Rare Diseases (EJP RD).

Experts from across Europe identified 57 key psychosocial needs — with emotional support, access to care, and family involvement among the top priorities — and set out six research directions to embed mental health and wellbeing in rare disease services.

👉 Read our article: https://eurogen-ern.eu/addressing-psychosocial-vulnerability-in-rare-diseases-a-european-call-to-action/

📄 Full paper: https://link.springer.com/article/10.1186/s13023-025-04017-3

European Commission Jardin Joint Action Erdera

Background Persons living with a rare disease (PLWRD) often encounter burdensome and stressful events that may severely affect their psychosocial vulnerability. There is an urgent need for psychosocial support in PLWRD. We aimed to reach consensus about the most prominent psychosocial needs in rare....

10/11/2025

✨ ERN eUROGEN at the ESSIC–CONVPP Congress 2025! ✨

From 23–25 October, experts gathered in Milan 🇮🇹 for the combined ESSIC–CONVPP Annual Meeting, focused on bladder pain syndrome and pelvic pain.

Our Programme Manager, Michelle Battye, presented on ERN eUROGEN’s collaboration with ESSIC, and Dr Dick Janssen shared progress on our Clinical Practice Guidelines on Rare Bladder Inflammatory Diseases.

We’re proud to strengthen ties with our Supporting Partner ESSIC and look forward to future joint activities on webinars and registries.

👉 Read the full story: https://eurogen-ern.eu/ern-eurogen-at-the-essic-convpp-congress-2025/

European Commission Jardin Joint Action ESSIC - International Society for the Study of Bladder Pain Syndrome - BPS

The International Society for the Study of Bladder Pain Syndrome (ESSIC) and the Convergences in Pelvi-Perineal Pain Society (CONVPP) proudly joined forces this year to host a combined Annual Meeting in the vibrant city of Milan, Italy, from 23-25 October 2025. This collaboration between the two org...

07/11/2025

📢 Your voice matters! The European Commission is shaping the next long-term EU budget (2028–2034) — but rare diseases are missing from the proposal, and the EU4Health programme is no longer listed separately.

💙 European Reference Networks (ERNs) connect specialists across Europe to improve care for people with rare and complex conditions. We must ensure they remain visible and funded in the EU’s future budget.

🕛 Deadline: 12 November (midnight Brussels time)
💬 Add your voice now and help keep rare diseases on the EU agenda:
👉 https://eurogen-ern.eu/rare-diseases-and-erns-must-remain-visible-in-the-eus-future-budget

European Commission Jardin Joint Action

The European Commission has opened a consultation on the draft Multiannual Financial Framework (MFF) — the EU’s long-term budget plan. In the current proposal, rare diseases are not explicitly mentioned, and the EU4Health programme no longer appears as a standalone initiative. European Reference...

06/11/2025

📘🔍 Webinar now online! Catch up on our overview of the ERN eUROGEN Guidelines for Anorectal Malformations, presented by Jan-Hendrik Gosemann, Ramon Gorter & Willemijn Irvine.

Learn about the guideline development process, key recommendations, and how they aim to improve care for patients with these rare and complex conditions.

🎥 Watch now: https://youtu.be/KBHFZsYsJ3g

📝 Read about all our ARM Resources: https://eurogen-ern.eu/updated-ern-eurogen-resources-for-anorectal-malformations/

📩 Subscribe to our newsletter: https://bit.ly/4j7MaHU

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

This webinar was presented on 5 November by Dr. Jan-Hendrik Gosemann, Dr. Ramon Gorter and Willemijn Irvine, MSc. Dr Gosemann works as a paediatric surgeon a...

05/11/2025

🚨 TONIGHT! Join our next ERN eUROGEN & ERNICA webinar, supported by EUPSA & ARM-Net!

📘 ERN eUROGEN Guidelines for Anorectal Malformations: Overview & Clinical Impact
🗣 Jan Gosemann, Ramon Gorter & Willemijn Irvine
🗓 Wednesday 5 November | ⏰ 18:00–19:00 CET
🎓 EACCME-accredited
👉 Register now: https://bit.ly/eUROGEN05Nov25

The session includes a case presentation, insight into the guideline development process, and an overview of the final recommendations for ARM care.

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

03/11/2025

📢 Join our next ERN eUROGEN & ERNICA webinar, supported by EUPSA & ARM-Net!

📘 ERN eUROGEN Guidelines for Anorectal Malformations: Overview & Clinical Impact
🗣 Jan Gosemann, Ramon Gorter & Willemijn Irvine
🗓 Wednesday 5 November | ⏰ 18:00–19:00 CET
🎓 EACCME-accredited
👉 Register now: https://bit.ly/eUROGEN05Nov25

The session includes a case presentation, insight into the guideline development process, and an overview of the final recommendations for ARM care.

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

29/10/2025

🚨 TONIGHT! Join an ERN eUROGEN & ERNICA webinar, supported by EUPSA & ARM-Net!

🧠 Motility of the Re**um in Anorectal Malformations

🗣️ With Prof. Sebastian King (Royal Children's Hospital, Melbourne) & Prof. Marc Benninga (Amsterdam UMC)

🗓 Wednesday 29 October | ⏰ 18:00–19:00 CET

🎓 EACCME-accredited

👉 Register now: https://bit.ly/eUROGEN29Oct25

This session explores anorectal and colonic manometry in children with ARM and related congenital conditions—essential insights into diagnosis and management.

European Commission Jardin Joint Action

28/10/2025

🎥 🧠 Now available to watch! Missed our webinar on Interstitial Cystitis: Multidisciplinary Management of Complex Bladder Pain Syndrome by Dr. Lisa Moris? Watch it on YouTube: https://youtu.be/C9yFFx06I24

This session offers practical insights on managing this challenging condition through a multidisciplinary approach — essential viewing for anyone working in urology, pain management, and rare uro-recto-genital diseases.

📩 Stay in the loop – subscribe to our newsletter: https://bit.ly/4j7MaHU

European Commission Jardin Joint Action Aici - Associazione Italiana Cistite Interstiziale

This webinar was presented on 22 October by Dr. Lisa Moris, who is a urologist at the University Hospital in Leuven, Belgium. Her research interests are: ket...

27/10/2025

📣 Join our next ERN eUROGEN & ERNICA webinar, supported by EUPSA & ARM-Net!

🧠 Motility of the Re**um in Anorectal Malformations

🗣️ With Prof. Sebastian King (Royal Children's Hospital, Melbourne) & Prof. Marc Benninga (Amsterdam UMC)

🗓 Wednesday 29 October | ⏰ 18:00–19:00 CET

🎓 EACCME-accredited

👉 Register now: https://bit.ly/eUROGEN29Oct25

This session explores anorectal and colonic manometry in children with ARM and related congenital conditions—essential insights into diagnosis and management.

European Commission Jardin Joint Action