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WHO Global Network for Rare Diseases Workshop, December 2023
12 January 2024The WHO Global Network for Rare Diseases (GNRD) envisions a world where all persons living with a rare disease...
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EJP RD: Training on Real-World Data in Rare Diseases
11 January 2024The European Joint Programme on Rare Diseases is organizing the training webinar: “Real-World data, Machine learning and Deep analytics in...
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EJP RD: Training on Undiagnosed Rare Disease Cases
12 December 2023As part of the training activities proposed by EJP RD, a 3-day training course on “Training on strategies to foster solutions of...
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EURORDIS ePAG Steering Committee Meeting 2023
11 December 2023The EURORDIS European Patient Advocacy Group (ePAG) Steering Committee Annual Meeting (virtual, 13 November 2023) reviewed the results of...
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Change To ERN Data Monitoring Collection for 2024
11 December 2023In the New Year, as part of the continual ERN evaluation process, ERN eUROGEN’s healthcare providers (HCPs) will be...
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Online Hands-On Paediatric Colorectal Surgery Course
11 December 2023An online hands-on paediatric colorectal surgery course will be held from 22-23 February 2024, supported by ERN eUROGEN, ERN...
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ERN Managers Discuss Performance Indicator System
11 December 2023On 28 November 2023, a meeting of the ERN Managers Working Group for the 24 ERNs took place. The...
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Webinar Emphasises Importance of ERN eUROGEN Registry
11 December 2023Another very successful ERN eUROGEN webinar (kindly supported by the European Society for Pediatric Urology) took place on 6...
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Clinical Practice Guideline: Diagnosis and Treatment of ARM
4 December 2023An ERN eUROGEN Expert Working Group has been adapting existing Dutch guidelines on anorectal malformations (ARM). We are happy...
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EURORDIS Patient Partnership Framework for the ERNs
4 December 2023EURORDIS has introduced the Patient Partnership Framework for the European Reference Networks (ERNs). This innovative guide is crafted to...
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