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