News & publications

  • 4th Conference on European Reference Networks – The Patient View

    Serena Bartezzati (eUROGEN EPAG representative) attended the conference in Brussels from 21-22 November and has kindly provided us with a patient’s perspective both on the meeting and on the progress of the ERNs to-date. “The ERN conference held from...

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    eUROGEN
  • 4th ERN Conference – Brussels, 21 & 22 November 2018

    Health professionals, researchers, patient organisations and policymakers gathered in Brussels on 21 & 22 November for the 4th European Reference Networks Conference. The well-attended and lively event featured two full days of presentations and debate, driven by plenary sessions and eight...

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    eUROGEN
  • International Children’s Continence Society (ICCS) 2018 Annual Meeting

    The International Children’s Continence Society (ICCS) 2018 Annual Meeting was held in Rome from 26-29 September and covered almost all areas relevant to the pediatric urinary tract and its malfunction.  Wout Feitz (Workstream 3 Lead) and Serena Bartezzati (EPAG...

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    eUROGEN
  • The European Joint co-fund Programme for Rare Diseases (EJP-RD) approved

    Rare diseases are a major challenge that requires integrated and collaborative efforts from a wide range of stakeholders. To take rare disease collaborative research in Europe to the next level and support achievement of the IRDiRC 2027 goals, the...

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    eUROGEN
  • INNOVCare Project: Results demonstrate need for integrated care for rare disease patients

    The results of the INNOVCare Project (Innovative Patient-Centred Approach for Social Care Provision to Complex Conditions) were announced at the final project conference in Brussels on 5 September, to 80 participants from 18 countries across all stakeholders. The results demonstrate the...

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    eUROGEN
  • ePAG Steering Committee

    From 13-14 September, the ePAG Steering Committee met in Brussels, with Dalia Aminoff and Serena Bartezzati representing eUROGEN. Birute Tumiene, a geneticist from Vilnius University Hospital Santaros Klinikos, and Representative of Lithuania in the ERN Board of Member States...

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    eUROGEN
  • EU Funding News

    New call for proposals A new call for ERNs to apply to the Connecting European Facilities Fund (CEF) was published on 28 June 2018, with a submission deadline of 22 September 2018.  The grant will fund activities related to...

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    eUROGEN
  • Genetic Alliance UK Event, Houses of Parliament, London

    Genetic Alliance UK (the national charity alliance of over 200 patient organisations working to improve the lives of patients and families affected by all types of genetic conditions) held an event at the Houses of Parliament, London, on 9...

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    eUROGEN
  • ERN Coordinators Group (ERN CG) Meeting, Brussels

    Prof Wout Feitz (WS1 Lead) (NL) and Michelle Battye (Manager) (UK) represented eUROGEN at the ERN CG meeting on 25 June 2018 in Brussels.  These meetings are held three times a year, chaired by the European Commission (EC) DG...

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    eUROGEN