News & publications

  • 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
  • 2nd Annual eUROGEN Strategic Board Meeting, Noordwijk

    We held our 2nd Annual Strategic Board meeting in Noordwijk from 11-12 June 2018, with 43 attendees representing our Coordinating Team, Operational Board, Workstreams, Health Care Providers (HCPs) and European Patient Advocacy Group (ePAG), as well as the European...

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    eUROGEN
  • eUROGEN: Improving lives for patients with rare diseases

    The European Reference Network (ERN) eUROGEN is already the most proactive of the 24 ERNs approved and funded by the European Commission (EC), announced Mrs. Michelle Battye (GB) in a specialty session at the 33rd edition of the Annual...

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    eUROGEN
  • EU Commissioner Vytenis Andriukaitis on eUROGEN

    Prof Chris Chapple introduces EU Commissioner Vytenis Andriukaitis at the EAU18 opening ceremony, after a dynamic performance by the Copenhagen Drummers. We also get a behind the scenes look at a conversation between Prof Chapple and the EU Commissioner...

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    eUROGEN