Slide IG 27 02

27 February 2018, 15.00-17.00
Room (ASP 3H1)
European Parliament, Brussels


14:30 – 15:00 Registration & Accreditation
Meeting point: Altiero Spinelli (ASP) entrance from Place du Luxembourg

Chair: Stephen McMahon – Irish Patients’ Associations

15:00 – 15:15 Welcome address and keynote presentation

  • MEP Patrizia Toia (Italy) Group of the Progressive Alliance of Socialists and Democrats in the European Parliament
  • Mariano Votta – Director of Active Citizenship Network

15:15 – 15:50 ERNs and centres of excellence: a challenge beyond borders

  • Nora Kajtar – Policy Officer, European Commission - Cross-Border Healthcare & eHealth Unit
  • Maurizio Scarpa – Coordinator European Reference Network for Hereditary Metabolic Diseases (MetabERN), Chair of the ERN Coordinators Working Group
  • Luca Sangiorgi – Coordinator, European Reference Network on Rare Bone Diseases (ERN BOND)

15:50 – 16:45 Experiences & perspective concerning cross-border healthcare. Proposals on how to contribute to improving patients’ access and information

  • Beatrice De Schepper – European Huntington Association - Patient representative in the ERN RND (Rare Neurological Diseases)
  • Gábor Pogány President of Hungarian Rare Diseases Federation, member of the EURORDIS Patient Advocacy Group (E-PAG) on ERNs
  • Jasna Karacic – Croatian Association for the Promotion of Patients' Rights
  • Pascal Garel – European Hospital and Healthcare Federation (HOPE)
  • Giuseppe Banfi - Scientific Director Istituto Ortopedico Galeazzi
  • Scott Pescatore – General Manager for Rare Disease EU, Novartis Oncology
  • Brian Kennedy – Global Alliance for Patient Access

16:45 – 17:00 Debate

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