Programmazione
Conference 12.35-13.00 Discussion Erica Daina, IRCCS - Mario Negri Institute for Pharmacological 13.00-13.45 Lunch Research Clinical Research Center for Rare Diseases “Aldo e Cele UNDIAGNOSED RARE DISEASES: Daccò”, Ranica, Italy A JOINT ITALY-USA PROJECT SESSION 2:Further Italian experiences on Undiagnosed Bruno Dallapiccola, Bambino Gesù Children's Hospital, IRCCS, ISTITUTO SUPERIORE DI SANITA’ Diseases Rome, Italy. National Centre for Rare Diseases Chair: Giuseppe Remuzzi and Domenica Taruscio Maria Chiara de Stefano, National Centre for Rare Diseases, Istituto Superiore di Sanità, Rome, Italy Maya Di Rocco, Clinical group, Scientific Committee for 13.45-14.05 Undiagnosed Diseases: the experience of the Regional Coordination of rare diseases A.Li.Sa. – Azienda 8.30-9.00 Registration Ospedale Pediatrico Bambino Gesù Sanitaria Liguria Region, Genoa, Italy 9.00-9.10 Welcome address M. Tartaglia, B. Dallapiccola Alessandra Ferlini, University-Hospital of Ferrara, Italy W. Ricciardi 14.05-14.25 Telethon Network for Undiagnosed Diseases Giovanna Floridia, Bioethics Unit, Istituto Superiore di Sanità, SESSION 1: The International and the ISS Undiagnosed V. Nigro, G. Casari Rome, Italy Diseases Network - UDN- 14.25-16.00 Round Table “From National Network for Lucia Guidotti, Direzione Generale della Programmazione Chair: Giuseppe Novelli Rare diseases, to European Reference Sanitaria- Ministero della Salute Networks and International initiatives: Paraskevas Iatropoulos, IRCCS - Mario Negri Institute for 9.10-9.40 The USA Undiagnosed Diseases Pharmacological Research Clinical Research Center for Rare strengths, weaknesses and opportunities” Network (UDN) Diseases “Aldo e Cele Daccò”, Ranica, Italy D. Roccatello, E. Daina, B. Bembi, M. Di D. Adams Alessia Massaccesi, Comitato " I Malati Invisibili Onlus", Genoa, Rocco, D.
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