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E-Health Innovation to Overcome Barriers in Neuromuscular Diseases. Report from the 1st eNMD Congress : Nice, France, March 22-23, 2019 / Pini, J. (Université Côte d'Azur (UCA). Centre Hospitalier Universitaire de Nice. Peripheral Nervous System and Muscle Department. Rare Neuromuscular Disease Reference Center. ERN-Euro-NMD) ; Siciliano, G. (Neurological Clinic. Department of Clinical and Experimental Medicine. Ospedale Santa Chiara. University of Pisa) ; Lahaut, P. (Université Côte d'Azur (UCA). Centre Hospitalier Universitaire de Nice. Peripheral Nervous System and Muscle Department. Rare Neuromuscular Disease Reference Center. ERN-Euro-NMD) ; Braun, S. (AFM Telethon) ; Segovia-Kueny, S. (AFM Telethon) ; Kole, A. (Public Health Policy Director Rare 2030 Lead EURORDIS) ; Hérnando, I. (Healthcare Director EURORDIS) ; Selb, J. (University Clinic Golnik. Golnik. Slovenia -Medical Consultant Parsek) ; Schirinzi, E. (Neurological Clinic. Department of Clinical and Experimental Medicine. Ospedale Santa Chiara. University of Pisa) ; Duong, T. (Department of Neurology Stanford University) ; Hogrel, J.Y. (Institut de Myologie (París, França)) ; Olmedo, J.J.S. (Escuela Técnica Superior de Ingenieros de Telecomunicación) ; Vissing, J. (Copenhagen Neuromuscular Center. Rigshospitalet. University of Copenhagen) ; Servais, L. (Division of Child Neurology Reference Center for Neuromuscular Disease. Centre Hospitalier Régional de Références des Maladies Neuromusculaires. Department of Paediatrics. University Oxford) ; Vincent-Genod, D. (L'Escale. Pediatric Rehabilitation Department. Hospices Civils de Lyon) ; Vuillerot, C. (Neuron Interaction Team. NeuroMyogène Institute. Lyon University) ; Bannwarth, S. (Institute for Research on Cancer and Aging of Nice (IRCAN). Faculty of Medicine. Université Côte d'Azur (UCA)) ; Eggenspieler, D. (Healthcare Program Director. Sysnav) ; Vicart, S. (Channelopahies Reference Center. Service of Neuro-Myology. University Hospital Pitié-Salpêtrière. Assistance Publique-Hôpitaux de Paris) ; Diaz-Manera, Jordi (Institut d'Investigació Biomèdica Sant Pau) ; Lochmüller, H. (Centre de Regulació Genòmica) ; Sacconi, S. (Fédération Hospitalo-Universitaire Oncoage. Centre Hospitalier Universitaire de Nice. Université Côte d'Azur (UCA)) ; Cavalli, M. (Université Côte d'Azur (UCA). Centre Hospitalier Universitaire de Nice. Peripheral Nervous System and Muscle Department. Rare Neuromuscular Disease Reference Center. ERN-Euro-NMD) ; Puma, A. (Université Côte d'Azur (UCA). Centre Hospitalier Universitaire de Nice. Peripheral Nervous System and Muscle Department. Rare Neuromuscular Disease Reference Center. ERN-Euro-NMD) ; Villa, L. (Université Côte d'Azur (UCA). Centre Hospitalier Universitaire de Nice. Peripheral Nervous System and Muscle Department. Rare Neuromuscular Disease Reference Center. ERN-Euro-NMD) ; Andr, E. (Université Côte d'Azur (UCA). Centre Hospitalier Universitaire de Nice. Peripheral Nervous System and Muscle Department. Rare Neuromuscular Disease Reference Center. ERN-Euro-NMD)
By definition, neuromuscular diseases are rare and fluctuating in terms of symptoms; patients are often lately diagnosed, do not have enough information to understand their condition and be proactive in their management. [...]
2021 - DOI (Digital Object Identifier)

10.3233/JND-210655
Journal of Neuromuscular Diseases, Vol. 8 Núm. 4 (2021) , p. 743-754

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