Neuromuscular Junction Working Group – Myasthenia Gravis (MG) and Congenital Myasthenic Syndromes (CMS)
Existing guidelines have been collected for MG (Europe, US, UK, Germany, Italy, France) and a gap analysis was carried out. There are few if any guidelines for paediatric MG and for CMS. In addition, the need to provide guidelines and standardization for antibody testing in MG was highlighted and will be addressed separately. An ENMC workshop for guidelines in paediatric CMS will be convened in early 2019. Further topics of interest to the group are standardization of serological diagnosis in MG, gene discovery and diagnosis in CMS, data sharing, electrophysiology and imaging. Patients with CMS/MG should get access to clinical research including registries, biobanks, natural history studies and clinical trials.
| Name | Organisation |
| Angela Abicht | Department of pediatric Neurology, Dr.v. Hauner Childrens hospital, Ludwig Maximilians University |
| Shahram Attarian | AP-HM |
| Christine Barnerias | Hôpital Raymond Poincaré, 92380 GARCHES |
| Luis Bataller | Hospital Universitario y Politécnico La Fe |
| Carla Battisti | Azienda Ospedaliera Universitaria Senese |
| Gunnar Buyse | University Hospitals Leuven, Neuromuscular Reference Centre |
| Kristl Claeys | University Hospitals Leuven, Neuromuscular Reference Centre |
| Giacomo Comi | Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano (University Hospital Italy) |
| Pedro Rodriguez Cuz | Oxford University Hospitals NHS Foundation Trust |
| Jan De Bleecker | UZ Gent |
| Anna De Rosa | Azienda Ospedaliera Universitaria Pisana (AOUP) |
| Liesbeth De Waele | University Hospitals Leuven, Neuromuscular Reference Centre |
| Nicolas Deconinck | Centre de Référence Neuromusculaire Erasme-HUDERF, Université Libre de Bruxelles |
| Della Marina | Childrens Clinic Essen University Hospital (University Hospital Germany) |
| Maria Terersa Dotti | Azienda Ospedaliera Universitaria Senese |
| Emmeline Lagrange | Rhône Alpes neuromuscular center |
| Teresinha Evangelista | Newcastle upon Tyne Hospitals NHS Foundation Trust |
| Amelia Evoli | Fondazione Policlinico Universitario A. Gemelli |
| Bruno Ferrero | Azienda Ospedaliera Universitaria Città della Salute edella Scienza di Torino |
| Massimiliano Filosto | ASST “Spedali Civili” |
| Marguerite Friconneau | AFM-Téléthon |
| Petra Fuchsová | Faculty Hospital Motol, Prague |
| Josep Gamez | Hospital Universitari Vall d’Hebron |
| Fabio Giannini | Azienda Ospedaliera Universitaria Senese |
| Federica Ginanneschi | Azienda Ospedaliera Universitaria Senese |
| Nathalie Goemans | University Hospitals Leuven, Neuromuscular Reference Centre |
| Melania Guida | Azienda Ospedaliera Universitaria Pisana (AOUP) |
| Agnes Herczegfalvi | Semmelweis University |
| Isabel Illa Sendra | Hosipital de la Santa Creu i Sant Pau |
| Anna Kostera-Pruszczyk | SPCSK, Department of Neurology, Medical University of Warsaw,Banacha 1a Warsaw |
| Pascal Laforet | Hôpital Raymond Poincaré, 92380 GARCHES |
| Diana Lehmann | Universitätsklinikum Ulm (UKU) in cooperation with the Universitäts- und Rehabilitationskliniken Ulm (RKU) |
| Isabel Leite | Oxford University Hospitals NHS Foundation Trust |
| Marta Lipowska | SPCSK, Department of Neurology, Medical University of Warsaw,Banacha 1a Warsaw |
| Ivan Litvinenko | Expert Centre for Hereditary Neurologic and Metabolic Disorders |
| Albert C Ludolph | Universitätsklinikum Ulm (UKU) in cooperation with the Universitäts- und Rehabilitationskliniken Ulm (RKU) |
| Michelangelo Maestri | Azienda Ospedaliera Universitaria Pisana (AOUP) |
| Magda Horakova | University Hospital Brno |
| Marion Main | Great Ormond Street Hospital |
| Alessandro Malandrini | Azienda Ospedaliera Universitaria Senese |
| Nicolas Mavroudakis | Centre de Référence Neuromusculaire Erasme-HUDERF, Université Libre de Bruxelles |
| Tiziana Mongini | Azienda Ospedaliera Universitaria Città della Salute edella Scienza di Torino |
| Wolfgang Müller-Felber | Department of pediatric Neurology, Dr.v. Hauner Childrens hospital, Ludwig Maximilians University |
| Francina Munell | Faculty Hospital Motol, Prague |
| Pinki Munot | Great Ormond Street Hospital |
| Andrés Nascimento | Hospital Sant Joan de Déu – Universidad de Barcelona |
| Daniel Natera | Hospital Sant Joan de Déu – Universidad de Barcelona |
| Lorenzo Peverelli | Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano (University Hospital Italy) |
| Matthew Pitt | Great Ormond Street Hospital |
| Anna Potulska-Chromik | SPCSK, Department of Neurology, Medical University of Warsaw,Banacha 1a Warsaw |
| Angela Puma | CHU NICE |
| Hayley Ramjattan | Oxford University Hospitals NHS Foundation Trust |
| Gauthier Remiche | Centre de Référence Neuromusculaire Erasme-HUDERF, Université Libre de Bruxelles |
| Roberta Ricciardi | Azienda Ospedaliera Universitaria Pisana (AOUP) |
| Stephanie Robb | Great Ormond Street Hospital |
| Carmelo Rodolico | AOU Policlinico “G.Martino” Messina |
| Angela Rosenbohm | Universitätsklinikum Ulm (UKU) in cooperation with the Universitäts- und Rehabilitationskliniken Ulm (RKU) |
| Sabrina Sacconi | CHU NICE |
| Emmanuelle Salort-Campana | AP-HM |
| Maria Salvado | Faculty Hospital Motol, Prague |
| Ulrike Schara | Childrens Clinic Essen University Hospital (University Hospital Germany) |
| Beate Schlotter-Weigel | Friedrich-Baur-Institute, Klinikum der LMU Munich |
| Jens Schmidt | University Medical Center Goettingen |
| Benedikt Schoser | Friedrich-Baur-Institute, Klinikum der LMU Munich |
| Monica Sciacco | Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano (University Hospital Italy) |
| Claudio Semplicini | Azienda Ospedaliera – University of Padova |
| Jan Senderek | Friedrich-Baur-Institute, Klinikum der LMU Munich |
| Francesco Sicurelli | Azienda Ospedaliera Universitaria Senese |
| Stanislav Vohanka | University Hospital Brno |
| Piotr Szczudlik | SPCSK, Department of Neurology, Medical University of Warsaw,Banacha 1a Warsaw |
| Gioacchino Tedeschi | University Hospital ” Luigi Vanvitelli” |
| Vincenzo Todisco | University Hospital “Luigi Vanvitelli” |
| Ivailo Tournev | Expert Centre for Hereditary Neurologic and Metabolic Disorders |
| Rudy Van Coster | UZ Gent |
| Philip Van Damme | University Hospitals Leuven, Neuromuscular Reference Centre |
| Anneke van der Kooi | AMC Amsterdam |
| Juan J Vílchez | Hospital Universitario y Politécnico La Fe |
| Luisa Villa | CHU NICE |
| Irene Volonghi | ASST “Spedali Civili” |
| Daniela Botikova | University Hospital Brno |
Chair
Lorenzo Maggi
Chair
Hanns Lochmüller
Vice-Chair
