Motor Neuron Disease

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

Guidelines recommended by the Motor Neuron Diseases Working Group group

Diagnosis and management of spinal muscular atrophy: Part 2

Neuromuscular Disorders – March, 2018

Diagnosis and management of spinal muscular atrophy: Part 1

Neuromuscular Disorders – February, 2018

EFNS guidelines on the clinical management of amyotrophic lateral sclerosis (MALS)–revised report of an EFNS task force

European Journal of Neurology – February, 2012

Motor Neurone Disease: Assessment and Management

Nice Guidelines – February, 2016

Group Leader
Jan Kirschner

Group Leader
Vincenzo Silani

Ludo van der Pol

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European Union (Health Programme and CEF)

EU Commission

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