The Motor Neuron Diseases WG has been divided into the two subgroups: ALS group and SMA group. The main focus and goals of both subgroups are: A. Harmonization and optimization guidelines B. Regular contact moments to exchange knowledge C. Mapping and sharing education & training Programmes To achieve these goals the ALS subgroup will make use of the existing European consortium ENCALS*. There is already a significant overlap between the lists ALS-subgroup members and ENCALS members. The non-ENCALS members will be encouraged to join this consortium. The 30 members (HCP’s) of the SMA-subgroup will form a core group that will prepare the agenda for meetings. Both groups still have to determine the frequency and dates of the meetings.
Patient representatives
Name | Organisation |
Mencía de Lemus Belmonte | FundAME Spain (president)/ SMA Europe (vice-president) |
Evy Reviers | ALS Liga Belgium (CEO) |
MND Working Group Members
Name | Organisation |
Shahram Attarian | AP-HM, France |
Leonard van den Berg | University Medical Centre Utrecht, the Netherlands |
Enrico Bertini | Ospedale Bambino Gesu IRCCS, Italy |
Adriano Chiò | AOU Città della Salute e della Scienza di Torino, Italy |
Philippe Couratier | CHU Limoges, France |
Jan de Bleecker | UZ Gent, Belgium |
Teresinha Evangelista | APHP – Pitié Salpêtrière, Paris, France |
Antonio Federico | Azienda Ospedaliera Universitaria Senese, Università di Siena, Italy |
Massimiliano Filosto | ASST “Spedali Civili”, Italy |
Josep Gamez | Hospital Universitari Vall d’Hebron, Spain |
Remiche Gauthier | Centre de Référence Neuromusculaire Erasme-HUDERF, Université Libre de Bruxelles, Belgium |
Jana Haberlová | Faculty Hospital Motol, Prague, Czech Republic |
Jan Kirschner | Medical Center – University of Freiburg, Germany |
Anneke van der Kooi | AMC Amsterdam, the Netherlands |
Anna Kostera-Pruszczyk | SPCSK, Department of Neurology, Medical University of Warsaw, Poland |
Claeys Kristl | University Hospitals Leuven, Neuromuscular Reference Centre, Belgium |
Albert C. Ludolph | Universitätsklinikum Ulm (UKU) in cooperation with the Universitäts- und Rehabilitationskliniken Ulm (RKU), Germany |
Béla Melegh | University of Pécs, Hungary |
Eugenio Mercuri | Fondazione Policlinico Universitario A. Gemelli, Rome, Italy |
Carlo Minetti | Giannina Gaslini Institute, Genova, ITALY |
Maurizio Moggio | Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano – University of Milan, Italy |
Maria Judit Molnar | Semmelweis University, Hungary |
Wolfgang Müller-Felber | Department of pediatric Neurology, Dr.v. Hauner Childrens hospital, Ludwig Maximilians University, Germany |
Andrés Nascimento | Hospital Sant Joan de Déu – Universidad de Barcelona, Spain |
Jackie Palace | Oxford University Hospitals NHS Foundation Trust, UK |
Carmen Paradas | Hospital Universitario Virgen del Rocío/IBiS, Sevilla, Spain |
Davide Pareyson | Fondazione IRCCS, Istituto Neurologico C.Besta, Italy |
Elena Pegoraro | Azienda Ospedaliera – University of Padova, Italia |
Borut Peterlin | University Medical Center Ljubljana, Slovenia |
Luisa Politano | University Hospital “Luigi Vanvitelli”, Italy |
Susana Quijano-Roy | Hôpital Raymond Poincaré, 92380 GARCHES, France |
Alexander Rossor | UCLH, UK |
Sabrina Sacconi | CHU NICE, France |
Valeria A. Sansone | Nemo Clinical Center, Italy |
Ulrike Schara | Universitätsklinikum (UK) Essen, Germany |
Jens Schmidt | University Medical Center Goettingen, Germany |
Isabel Illa Sendra | Hospital de la Santa Creu i Sant Pau, Spain |
Gabriele Siciliano | Azienda Ospedaliera Universitaria Pisana (AOUP), Italy |
Antonio Toscano | AOU Policlinico “G. Martino”, University of Messina, Italy |
Ivailo Tournev | Expert Centre for Hereditary Neurologic and Metabolic Disorders, Bulgaria |
Juan J Vílchez | Hospital Universitario y Politécnico La Fe, Spain |
Stanislav Vohanka | University Hospital Brno, Czech Republic |
Philip Van Damme | University Hospitals Leuven, Neuromuscular Reference Centre, Belgium |
Maggie C. Walter | Friedrich-Baur-Institute, Klinikum der LMU Munich, Germany |
Neuromuscular Disorders – March, 2018
Neuromuscular Disorders – February, 2018
European journal of neurology – March, 2024
European Journal of Neurology – February, 2012
Nice Guidelines – February, 2016
Group Leader
Jan Kirschner
Group Leader
Vincenzo Silani
Ludo van der Pol