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Addressing Psychosocial Vulnerability in Rare Diseases: A European Call to Action
30 October 2025A new publication in the Orphanet Journal of Rare Diseases highlights the urgent need for improved psychosocial support for people...
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Shaping the Future of Rare Disease Policy Together at ECRD 2026
30 October 2025ERN eUROGEN is proud to be an Associate Partner of the 13th European Conference on Rare Diseases & Orphan...
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Updated ERN eUROGEN Resources for Anorectal Malformations
25 September 2025ERN eUROGEN, the European Reference Network for Rare Uro-Recto-Genital Diseases and Complex Conditions, is pleased to announce new and...
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Urology Week 2025: UTIs in Rare and Complex Urogenital Conditions
22 September 2025This year’s Urology Week (22–26 September) shines a spotlight on urinary tract infections (UTIs) — one of the most...
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Hans Langenhuijsen Appointed Professor of Adrenal Surgery
12 September 2025ERN eUROGEN warmly congratulates Prof. Hans Langenhuijsen on his appointment as Professor of Adrenal Surgery at Radboud university medical...
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ERN eUROGEN Featured in the Journal of Pediatric Urology
8 September 2025We are delighted to share that ERN eUROGEN has been featured in a new review article published by the...
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Revised Orphanet Classification for Spina Bifida and Other Spinal Dysraphisms
14 July 2025We are pleased to share the publication of the paper “Revised Orphanet Nomenclature and Classification for Spina Bifida and...
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Patients Take the Stage: Sharing Stories of Empowerment and Advocacy
3 July 2025On Saturday, 28 June 2025, a group of inspiring adult patients living with VACTERL Association took to the stage...
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Cross-ERN OR Nurses Meeting: Building Connections, Sharing Knowledge
25 June 2025On 5–6 June 2025, operating room (OR) nurses from across Europe gathered in Rotterdam for the first in-person meeting...
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Clinical Patient Management System: Mobile Apps Now Available
19 June 2025Today, 19 June 2025, marks an exciting new chapter for the European Reference Networks with the public launch of...
