The focus of the working group is to establish the harmonisation of patient care in the member countries by setting up care guidelines and by providing training opportunities. We will make a plan how an optimal mitochondrial disease centres should be structured and what are the essential facilities and stuff personal to run such a centres successfully. If patient referrals will be sent to the electronic database, we will work out the optimal way of work within mitochondrial disease.
| Name | Organisation |
| Anna Ardissone | Fondazione IRCCS, Istituto Neurologico C.Besta |
| Rafa Artuch | Hospital Sant Joan de Déu – Universidad de Barcelona |
| Luca Bello | Azienda Ospedaliera – University of Padova |
| Gianna Berti | Azienda Ospedaliera Universitaria Senese |
| Enrico Bertini | Ospedale Bambino Gesu IRCCS |
| Giorgia Brigat | Istituto Gaslini |
| Claudio Bruno | Istituto Gaslini |
| Gunnar Buyse | University Hospitals Leuven, Neuromuscular Reference Centre |
| Elena Cardaioli | Azienda Ospedaliera Universitaria Senese |
| Filomena Caria | ASST “Spedali Civili” |
| Brigitte Chabrol | AP-HM |
| Teodora Chamova | Expert Centre for Hereditary Neurologic and Metabolic Disorders |
| Annabelle Chaussenot | CHU NICE |
| Jozsef Janszky | University of Pécs |
| Kristl Claeys | University Hospitals Leuven, Neuromuscular Reference Centre |
| Giacomo Comi | Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano (University Hospital Italy) |
| Stefania Corti | Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano (University Hospital Italy) |
| Stefano Cotti Piccinelli | ASST “Spedali Civili” |
| Boel De Paepe | UZ Gent |
| Liesbeth De Waele | University Hospitals Leuven, Neuromuscular Reference Centre |
| Emma del Rey | French Association for Mitochondrial Diseases |
| Adela Della Marina | Childrens Clinic Essen University Hospital (University Hospital Germany) |
| Daria Diodato | Ospedale Bambino Gesu IRCCS |
| Maria Terersa Dotti | Azienda Ospedaliera Universitaria Senese |
| Martin Engvall | Karolinska Universitetssjukhuset (University Hospital Sweden) |
| Massimiliano Filosto | ASST “Spedali Civili” |
| Benoit Funalot | Hôpital Raymond Poincaré, 92380 GARCHES |
| Serena Gallo Cassarino | ASST “Spedali Civili” |
| Josep Gamez | Hospital Universitari Vall d’Hebron |
| Daniele Ghezzi | Fondazione IRCCS, Istituto Neurologico C.Besta |
| Nathalie Goemans | University Hospitals Leuven, Neuromuscular Reference Centre |
| Granine Gorman | Newcastle upon Tyne Hospitals NHS Foundation Trust |
| Kinga Hadzsiev | University of Pécs |
| Anna Kaminska | SPCSK, Department of Neurology, Medical University of Warsaw,Banacha 1a Warsaw |
| Ivan Karin | Friedrich-Baur-Institute, Klinikum der LMU Munich |
| Biruta Kierdaszuk | SPCSK, Department of Neurology, Medical University of Warsaw,Banacha 1a Warsaw |
| Thomas Klopstock | Friedrich-Baur-Institute, Klinikum der LMU Munich |
| Thomas Klopstock | Department of pediatric Neurology, Dr.v. Hauner Childrens hospital, Ludwig Maximilians University |
| Cornelia Kornblum | University Hospital of Bonn |
| Norbert Kovacs | University of Pécs |
| Costanza Lamperti | Fondazione IRCCS, Istituto Neurologico C.Besta |
| Diana Lehmann | Universitätsklinikum Ulm (UKU) in cooperation with the Universitäts- und Rehabilitationskliniken Ulm (RKU) |
| Anna Lusakowska | SPCSK, Department of Neurology, Medical University of Warsaw,Banacha 1a Warsaw |
| Ester Maier | Department of pediatric Neurology, Dr.v. Hauner Childrens hospital, Ludwig Maximilians University |
| Alessandro Malandrini | Azienda Ospedaliera Universitaria Senese |
| Michelangelo Mancuso | Azienda Ospedaliera Universitaria Pisana (AOUP) |
| Robert McFarland | Newcastle upon Tyne Hospitals NHS Foundation Trust |
| Bela Melegh | University of Pécs |
| Mariarosa Anna Beatrice Melone | University Hospital ” Luigi Vanvitelli” |
| Maria Judit Molnar | Semmelweis University |
| Tiziana Mongini | Azienda Ospedaliera Universitaria Città della Salute edella Scienza di Torino |
| Vincenzo Montano | Azienda Ospedaliera Universitaria Pisana (AOUP) |
| Francina Munell | Hospital Universitari Vall d’Hebron |
| Olimpia Musumeci | AOU Policlinico “G.Martino” Messina |
| Karin Naess | Karolinska Universitetssjukhuset (University Hospital Sweden) |
| Damjan Osredkar | University Medical Center Ljubljana |
| Endre Pál | University of Pécs |
| Veronique Paquis | CHU NICE |
| Francisco Javier Pérez-Mínguez | Fundación Ana Carolina Díez Mahou |
| Lorenzo Peverelli | Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano (University Hospital Italy) |
| Zoltan Pfund | University of Pécs |
| Gauthier Remiche | Centre de Référence Neuromusculaire Erasme-HUDERF, Université Libre de Bruxelles |
| Marlene Rio | Hôpital Raymond Poincaré, 92380 GARCHES |
| 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 | Hospital Universitari Vall d’Hebron |
| Piero Santantonio | |
| Andy Schaefer | Newcastle upon Tyne Hospitals NHS Foundation Trust |
| Ulrike Schara | Childrens Clinic Essen University Hospital (University Hospital Germany) |
| Monica Sciacco | Fondazione IRCCS Ca’ Granda Ospedale Maggiore Policlinico Milano (University Hospital Italy) |
| Serenella Servidei | Fondazione Policlinico Universitario A. Gemelli |
| Bert Smeets | Maastricht UMC+ |
| Kalliopi Sofou | Sahlgrenska University Hospital (University Hospital Sweden) |
| Göran Solders | Karolinska Universitetssjukhuset (University Hospital Sweden) |
| Robert W Taylor | Newcastle upon Tyne Hospitals NHS Foundation Trust |
| Agnes Till | University of Pécs |
| Valeria Tiranti | Fondazione IRCCS, Istituto Neurologico C.Besta |
| Doug Turnbull | Newcastle upon Tyne Hospitals NHS Foundation Trust |
| Rudy Van Coster | UZ Gent |
| Philip Van Damme | University Hospitals Leuven, Neuromuscular Reference Centre |
| Anneke van der Kooi | AMC Amsterdam |
| Liliana Vercelli | Azienda Ospedaliera Universitaria Città della Salute edella Scienza di Torino |
| Luisa Villa | CHU NICE |
| Ekkehard Wilichowski | University Medical Center Goettingen |
| Judith Zima | University of Pécs |
Guidelines recommended by the Mitochondrial Diseases Working Group group
Revisiting mitochondrial diagnostic criteria in the new era of genomics
Genetics in Medicine – October, 2017
Patient Care Standards for Primary Mitochondrial Disease: A Consensus Statement from the Mitochondrial Medicine Society
Genetics in Medicine – July, 2017
Outcome measures and clinical trial readiness in primary mitochondrial myopathies in children and adults
Neuromuscular Disorders – December, 2017
Common data elements for clinical research in mitochondrial disease
Journal of Inherited Metabolic Disease – May, 2017
Chair
Rita Horvath
Vice-Chair
