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ERN eUROGEN Book Launched on Rare Disease Day 2024
29 February 2024On Rare Disease Day 2024, ERN eUROGEN, the European Reference Network (ERN) for rare uro-recto-genital diseases and complex conditions,...
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Rare Disease Day 2024: The Vital Role of ERNs
29 February 2024Rare Disease Day 2024 marks a significant milestone for ERN eUROGEN, the European Reference Network for Rare Uro-Recto-Genital Diseases...
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The EC & ERNs: Providing Specialised Support to Ukraine
20 February 2024It is estimated that there are more than two million Ukrainian patients with a rare or complex disease. To...
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New Patient Information: Duplex Congenital Malformations of the UT
6 February 2024We are delighted to announce a significant advancement in patient education and support in the realm of urological health....
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IRDiRC Publication on Drug Repurposing for Rare Diseases
19 January 2024The latest IRDiRC paper, “Drug Repurposing for Rare: Progress and Opportunities for the Rare Disease Community” has been published...
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Announced: 30th International Conference on Spina Bifida
19 January 2024The first announcement has been made for the 30th International Conference On Spina Bifida & Hydrocephalus, to be held...
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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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