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ERN eUROGEN Results: Newborn Screening Survey
12 July 2024Last year, Rare Barometer asked ERN eUROGEN to assist with their Newborn Screening (NBS) Survey by providing a validated...
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EJP RD Publication: Building the Rare Diseases Research Ecosystem
4 July 2024We are pleased to share the publication of a new article highlighting the past five years of the European...
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ECRD 2024: ERN eUROGEN Involved Regarding Highly Specialised Care
14 June 2024Prof Ivo de Blaauw, ERN eUROGEN Sub-Coordinator, spoke in the session “Achieving Full Reach: Overcoming The Last Challenges To...
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ERN Coordinators Group Meeting, Luxembourg – 21 May 2024
14 June 2024The 20th meeting of the ERN 24 Coordinators with the European Commission’s DG SANTE team was held in person...
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ERN eUROGEN Transition: Welcome to New Coordinators
14 June 2024Due to Prof. Wout Feitz’s retirement on 8 May 2024, it became necessary to identify a new Coordinator for...
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New Version of Clinical Patient Management System Released
14 June 2024The new desktop version of the Clinical Patient Management System, CPMS 2.0, was released on 31 May 2024, with...
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Patient Involvement in Guidelines Development Handbook
12 June 2024An ERN Guideline Programme handbook on “Patients’ involvement in the development of Clinical Practice Guidelines (CPGs) and Clinical Decision...
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Patient Information: Congenital Malformations of the Urinary Tract
12 June 2024We are pleased to announce that the following patient information materials on Duplex Congenital Malformations of the Urinary Tract...
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ERN eUROGEN at the European Association of Urology Congress 2024
26 April 2024The ERN eUROGEN Coordination team was honoured to participate in the prestigious annual European Association of Urology congress, held...
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ERN eUROGEN Patient Journey for Anorectal Malformation
28 March 2024We are delighted to announce the publication of a new version of the ERN eUROGEN Patient Journey for Anorectal...