Our January newsletter is out! 📰 New updates on cross-ERN collaboration, rare disease policy, funding calls & upcoming education events. 👉 Read it here: tinyurl.com/EUROGENJanNews #EUfunded #EU4Health #HealthUnion #RareDisease #ERNs @ec.europa.eu @jardinjointaction.bsky.social

🧬 Discover how microRNAs can improve diagnosis & monitoring of testicular cancer! 📅 Wed 4 Feb @ 18:00 CET 🎙 João Lobo shares translational research & clinical insights 🔗 Register: events.zoom.us/ev/ArCdYFymJ... #EUfunded #UroOnc #RareDisease #ERNs @ec.europa.eu @jardinjointaction.bsky.social

🚨 Join @erneurogen.bsky.social for an expert-led webinar on Adrenal Cancer & Malignant Cysts 📅 Tonight @ 18:00 CET 🎙️ Hans Langenhuijsen & Nikola Knežević 🎓 EACCME accredited (live attendees) 🔗 events.zoom.us/ev/AuzZaVXQf... #EUfunded #UroOnc #ERNs #RareDisease @jardinjointaction.bsky.social

🧠 Join @erneurogen.bsky.social for an expert-led webinar on Adrenal Cancer & Malignant Cysts 📅 Wed 28 Jan @ 18:00 CET 🎙️ Hans Langenhuijsen & Nikola Knežević 🎓 EACCME accredited (live attendees) 🔗 events.zoom.us/ev/AuzZaVXQf... #EUfunded #UroOnc #ERNs #RareDisease @jardinjointaction.bsky.social

⚠️ Missed our cross-ERN webinar on medical device shortages & regulatory barriers? 🎥 Now on YouTube: www.youtube.com/watch?v=QGvG... 📰 Subscribe: bit.ly/4j7MaHU #EUfunded #EU4Health #HealthUnion #RareDisease #ERNs #UroSoMe @ec.europa.eu @jardinjointaction.bsky.social

🚨 TONIGHT! Join @erneurogen.bsky.social & ERNs across Europe for a crucial webinar: 🛠️ Medical Device Shortages & Regulatory Constraints 🗓️ Wed 21 Jan @ 18:00 CET 🎙️ With clinicians, regulators & industry experts 🔗 Register: events.zoom.us/ev/AvVY1AZbs... #EUfunded #HealthUnion #RareDisease #ERNs

Two weeks to go!

🧠 Join @erneurogen.bsky.social for an expert-led webinar on Adrenal Cancer & Malignant Cysts 📅 Wed 28 Jan @ 18:00 CET 🎙️ Hans Langenhuijsen & Nikola Knežević 🎓 EACCME accredited (live attendees) 🔗 events.zoom.us/ev/AuzZaVXQf... #EUfunded #UroOnc #ERNs #RareDisease @jardinjointaction.bsky.social

Join @erneurogen.bsky.social & ERNs across Europe for a crucial webinar: 🛠️ Medical Device Shortages & Regulatory Constraints 🗓️ Wed 21 Jan @ 18:00 CET 🎙️ With clinicians, regulators & industry experts 🔗 Register: events.zoom.us/ev/AvVY1AZbs... #EUfunded #HealthUnion #RareDisease #ERNs

🌍 Join Endo-ERN and ERN eUROGEN for a webinar on Access to ERNs & Resources for Rare Disease Care in #Ukraine 🇺🇦 🗓️ Wed 18 Feb @ 17:00 EET / 16:00 CET 👥 Includes CPMS, case study, Q&A 🔗 events.zoom.us/ev/As2sbnhOK... #EUfunded #RareDisease #ERNcare4Ua #HealthUnion #ERNs

What’s on the agenda? Join us in Prague & online on 3–4 June for sessions on rare disease therapies, early detection, specialised care, HTA & mental health — plus networking and poster pitches. ⏰ Register by 26 Feb 2026 to benefit from early-bird rates: https://go.eurordis.org/ecrd-programme

If you had 300 words to capture the impact of your work in rare diseases, what would you say? Poster abstracts at #ECRD2026 offer a structured space to share evidence, insights and lived experience. 🎟️ Accepted representing authors receive a 20% discount 👉https://go.eurordis.org/ecrd-posters-bluesky

Join @erneurogen.bsky.social & ERNs across Europe for a crucial webinar: 🛠️ Medical Device Shortages & Regulatory Constraints 🗓️ Wed 21 Jan @ 18:00 CET 🎙️ With clinicians, regulators & industry experts 🔗 Register: events.zoom.us/ev/AvVY1AZbs... #EUfunded #HealthUnion #RareDisease #ERNs

Join @erneurogen.bsky.social & ERNs across Europe for a crucial webinar: 🛠️ Medical Device Shortages & Regulatory Constraints 🗓️ Wed 21 Jan @ 18:00 CET 🎙️ With clinicians, regulators & industry experts 🔗 Register: events.zoom.us/ev/AvVY1AZbs... #EUfunded #HealthUnion #RareDisease #ERNs

Join @erneurogen.bsky.social & ERNs across Europe for a crucial webinar: 🛠️ Medical Device Shortages & Regulatory Constraints 🗓️ Wed 21 Jan @ 18:00 CET 🎙️ With clinicians, regulators & industry experts 🔗 Register: bit.ly/eUROGEN21Jan26 #EUfunded #HealthUnion #RareDisease #ERNs

Join @erneurogen.bsky.social & ERNs across Europe for a crucial webinar: 🛠️ Medical Device Shortages & Regulatory Constraints 🗓️ Wed 21 Jan @ 18:00 CET 🎙️ With clinicians, regulators & industry experts 🔗 Register: bit.ly/eUROGEN21Jan26 #EUfunded #HealthUnion #RareDisease #ERNs

✨ Our December newsletter is out! Catch up on ERN eUROGEN highlights from 2025, watch our annual festive video 🎄, and look ahead to 2026. 👉 Read now: european-association-of-urology.email-provider.eu/web/mjla6ut7... Happy holidays & best wishes for the New Year!

🚨 Registrations are OPEN for #ECRD2026 2026 marks a defining moment for rare disease policy in Europe. Five years after #Rare2030 and midway to the WHO 2028 target, #ECRD gathers the community to support the co-development of an EU Action Plan. 👉 Register now: https://www.rare-diseases.eu/register/

Prof Peter Mulders and Michelle Battye are in Brussels for the High-Level Meeting on building a European rare disease research & innovation ecosystem. 📸 Signing the Declaration, at the Parliament, and speaking on newborn screening. #EUfunded #EU4Health #HealthUnion #RareDisease #ERNs

📅🐧 Day 8 of #JARDIN's Advent Calendar ✨ @erneurogen.bsky.social is the ERN for rare uro-recto-genital diseases and complex conditions. It unites experts to improve diagnosis, treatment and outcomes, drive innovation, and ensure equitable access for patients across Europe. 🔗 https://eurogen-ern.eu

📢 ERDERA’s 2026 Joint Transnational Call is OPEN! The call “Resolving unsolved cases in rare genetic and non-genetic diseases” supports global research efforts to speed up diagnosis & improve outcomes. 🔗All the info is now available: https://loom.ly/YzdmNGY #ERDERA #RareDisease

👶 Join the Online Paediatric Colorectal Course, 5–6 Feb 2026! Hands-on training on ARM & Hirschsprung’s disease with interactive sessions, expert debates & model exercises 💻 🔗 pediatriccolorectalcourse.com #EUfunded #EU4Health #RareDisease #PedUro #SoMe4PedSurg #ERNs

ERKsperience is coming soon 🎉 Our new ERKNet case-based webinar series kicks off with: “The Hyperoxalurias – genetic, rare & acquired forms” Find out more ⬇️ 🗓 22 January 2026 | 🕔 17:00–18:00 CET 🔗 Register here & send us your hyperoxaluria cases to be featured! https://tinyurl.com/3knkkyn3

🚨 TONIGHT! Join a webinar on laparoscopic ureteral reimplantation for VUR in children 🎥👶 🗣 Gander & Pérez-Bertólez 📅 Wed 19 Nov @ 18:00 CET 🎓 EACCME accredited & supported by @espu.bsky.social 🔗 bit.ly/eUROGEN19Nov25 @ec.europa.eu @jardinjointaction.bsky.social @eupsaofficial.bsky.social

Join a webinar on laparoscopic ureteral reimplantation for VUR in children 🎥👶 🗣 Gander & Pérez-Bertólez 📅 Wed 19 Nov @ 18:00 CET 🎓 EACCME accredited & supported by @espu.bsky.social 🔗 bit.ly/eUROGEN19Nov25 @ec.europa.eu @jardinjointaction.bsky.social @eupsaofficial.bsky.social

New, updated & existing resources for Anorectal Malformations! 🩺 Combined Guideline: eurogen-ern.eu/our-work/gui... 📘 Patient Journey (+ new audio version): eurogen-ern.eu/patient-info... 💙 Sexual Support Website: sexualsupport.eu #EUfunded #EU4Health #RareDisease #ERNs #PedUro #SoMe4PedSurg

👶 Join the Online Paediatric Colorectal Course, 5–6 Feb 2026! Hands-on training on ARM & Hirschsprung’s disease with interactive sessions, expert debates & model exercises 💻 🔗 pediatriccolorectalcourse.com #EUfunded #EU4Health #RareDisease #PedUro #SoMe4PedSurg #ERNs

👶 The 16th European Paediatric Colorectal & Pelvic Reconstruction Meeting brought 250+ delegates from 40 countries to Stockholm 🇸🇪. 🔗 www.karolinskahospital.com/news/world-l... #EUfunded #EU4Health #HealthUnion #RareDisease #PedUro #ERNs

🧠 A new Orphanet Journal of Rare Diseases paper, led by Dr Rosanne Smits and supported by @erneurogen.bsky.social & funded by EJP RD, calls for stronger psychosocial care for people with rare conditions. 🔗 eurogen-ern.eu/addressing-p... #EUfunded #EU4Health #HealthUnion #RareDisease #ERNs

A look back at the ESSIC–CONVPP Congress 2025 🇮🇹 including presentations on ERN eUROGEN’s collaboration with ESSIC and our Rare Bladder Inflammatory Disease guidelines. 🔗 eurogen-ern.eu/ern-eurogen-... #EUfunded #EU4Health #RareDisease #ERNs #FPMRS @ec.europa.eu @jardinjointaction.bsky.social

🗣️ Rare diseases & ERNs are missing from the EU’s draft 2028–2034 budget! Help keep them visible & funded. Give feedback by 12 Nov 🕛 👉 eurogen-ern.eu/rare-disease... #EUfunded #EU4Health #HealthUnion #RareDisease #ERNs @ec.europa.eu @jardinjointaction.bsky.social

Now on YouTube! ERN eUROGEN Guidelines for Anorectal Malformations With Jan Gosemann, Ramon Gorter & Willemijn Irvine: 🎥 Watch: youtu.be/KBHFZsYsJ3g 📝 ARM resources: eurogen-ern.eu/updated-ern-... 📰 Subscribe: bit.ly/4j7MaHU #EUfunded #EU4Health #RareDisease #ERNs #PedUro #SoMe4PedSurg

🚨 TONIGHT! Join @erneurogen.bsky.social & ERNICA for a deep dive into the ERN eUROGEN Guidelines for ARM 📘 📅 Wed 5 Nov @ 18:00 CET 🗣 Jan Gosemann, Ramon Gorter & Willemijn Irvine 🎓 EACCME accredited 🔗 bit.ly/eUROGEN05Nov25 #EUfunded #EU4Health #RareDisease #ERNs #PedUro #SoMe4PedSurg

Join @erneurogen.bsky.social & ERNICA for a deep dive into the ERN eUROGEN Guidelines for ARM 📘 📅 Wed 5 Nov @ 18:00 CET 🗣 Jan Gosemann, Ramon Gorter & Willemijn Irvine 🎓 EACCME accredited 🔗 bit.ly/eUROGEN05Nov25 #EUfunded #EU4Health #RareDisease #ERNs #PedUro #SoMe4PedSurg

Join @erneurogen.bsky.social & ERNICA for a deep dive into the ERN eUROGEN Guidelines for ARM 📘 📅 Wed 5 Nov @ 18:00 CET 🗣 Jan Gosemann, Ramon Gorter & Willemijn Irvine 🎓 EACCME accredited 🔗 bit.ly/eUROGEN05Nov25 #EUfunded #EU4Health #RareDisease #ERNs #PedUro #SoMe4PedSurg

Every #ECRD poster tells a story of research, collaboration & action for people living with a rare disease. Share yours at #ECRD2026 and help shape the future of rare disease care in Europe. 📅 Deadline: 6 March 2026 👉 Submit: https://go.eurordis.org/ECRD2026Posters

Join a @erneurogen.bsky.social & ERNICA webinar supported by @eupsaofficial.bsky.social & ARM-Net 🖥️ Motility of the Rectum in ARMs 🗣️ Sebastian King 🇦🇺 & Marc Benninga 🇳🇱 📅 Wed 29 Oct @ 18:00 CET 🎓 EACCME accredited 🔗 bit.ly/eUROGEN29Oct25 #EUfunded #EU4Health #ERNs #RareDisease #PedUro #SoMe4PedSurg

🧠 Missed our webinar on Interstitial Cystitis & Complex Bladder Pain Syndrome? Dr. Lisa Moris shares a multidisciplinary approach. 📺 youtu.be/C9yFFx06I24 📰 bit.ly/4j7MaHU #EUfunded #EU4Health #HealthUnion #RareDisease #ERNs #FPMRS #UroSoMe

Join a @erneurogen.bsky.social & ERNICA webinar supported by @eupsaofficial.bsky.social & ARM-Net 🖥️ Motility of the Rectum in ARMs 🗣️ Sebastian King 🇦🇺 & Marc Benninga 🇳🇱 📅 Wed 29 Oct @ 18:00 CET 🎓 EACCME accredited 🔗 bit.ly/eUROGEN29Oct25 #EUfunded #EU4Health #ERNs #RareDisease #PedUro #SoMe4PedSurg

💙 On #WSBHD25 we stand with @ifsbh.bsky.social & partners to accelerate #Action4SBH. We developed guidelines on spinal dysraphism in children/adolescents with IFSBH, @uroweb.org, @espu.bsky.social, @erknet.bsky.social & ERN ITHACA 👉 bit.ly/4npuWZ3 #SpinaBifida #Hydrocephalus #EUfunded #ERNs

Join a @erneurogen.bsky.social & ERNICA webinar supported by @eupsaofficial.bsky.social & ARM-Net 🖥️ Motility of the Rectum in ARMs 🗣️ Sebastian King 🇦🇺 & Marc Benninga 🇳🇱 📅 Wed 29 Oct @ 18:00 CET 🎓 EACCME accredited 🔗 bit.ly/eUROGEN29Oct25 #EUfunded #EU4Health #ERNs #RareDisease #PedUro #SoMe4PedSurg

👶 Missed our webinar on anatomical & prenatal studies in anorectal malformations? Dr Sloots, Dr Peters, Dr Schepens-Franke & Dr Miyake present new insights. 📺 youtu.be/rlutK0fzUtE 📰 bit.ly/4j7MaHU #EUfunded #EU4Health #HealthUnion #RareDisease #ERNs #PedUro #SoMe4PedSurg

Join us for a webinar on Interstitial Cystitis and the multidisciplinary management of complex BPS 💡 📅 Wed 22 Oct @ 18:00 CEST 👶 Speaker: Lisa Moris from Leuven University Hospitals 🎓 EACCME-accredited 🔗 bit.ly/ERNeUROGEN22... #EUfunded #EU4Health #RareDisease #ERNs #FPMRS #InterstitialCystitis

🚨 TONIGHT! Join us for a joint webinar on prenatal & anatomical studies in ARM 💡 📅 Wed 15 Oct @ 18:00 CEST 👶 Featuring speakers from NL & Japan 🎓 EACCME-accredited 🔗 bit.ly/eUROGEN15Oct25 #EUfunded #EU4Health #RareDisease #ERNs #PedUro #SoMe4PedSurg

Join us for a joint webinar on prenatal & anatomical studies in ARM 💡 📅 Wed 15 Oct @ 18:00 CEST 👶 Featuring speakers from NL & Japan 🎓 EACCME-accredited 🔗 bit.ly/eUROGEN15Oct25 #EUfunded #EU4Health #RareDisease #ERNs #PedUro #SoMe4PedSurg

💧 Missed Wednesday's webinar on urological aspects in paediatric kidney transplantation? 📺 Watch: youtu.be/z1R_jOSVGgk 📰 Subscribe: bit.ly/4j7MaHU #EUfunded #EU4Health #HealthUnion #RareDisease #ERNs #PedUro #SoMe4PedSurg @espu.bsky.social

Join us for a joint webinar on prenatal & anatomical studies in ARM 💡 📅 Wed 15 Oct @ 18:00 CEST 👶 Featuring speakers from NL & Japan 🎓 EACCME-accredited 🔗 bit.ly/eUROGEN15Oct25 #EUfunded #EU4Health #RareDisease #ERNs #PedUro #SoMe4PedSurg

🚨 TONIGHT! Join ERN eUROGEN & @espu.bsky.social for a webinar on Urological Aspects in Paediatric Kidney Transplantation 🧒💧 📅 Wed 8 Oct @ 18:00 CEST 🎓 EACCME accredited 🔗 Register: bit.ly/eUROGEN08Oct25 #EUfunded #EU4Health #RareDisease #ERNs #PedUro #SoMe4PedSurg

Join ERN eUROGEN & @espu.bsky.social for a webinar on Urological Aspects in Paediatric Kidney Transplantation 🧒💧 📅 Wed 8 Oct @ 18:00 CEST 🎓 EACCME accredited 🔗 Register: bit.ly/eUROGEN08Oct25 #EUfunded #EU4Health #RareDisease #ERNs #PedUro #SoMe4PedSurg

Join ERN eUROGEN & @espu.bsky.social for a webinar on Urological Aspects in Paediatric Kidney Transplantation 🧒💧 📅 Wed 8 Oct @ 18:00 CEST 🎓 EACCME accredited 🔗 Register: bit.ly/eUROGEN08Oct25 #EUfunded #EU4Health #RareDisease #ERNs #PedUro #SoMe4PedSurg