European Economic
and Social Committee
ALS Side event programme
Last updated: 3 October 2023.
SIDE EVENT - Amyotrophic Lateral Sclerosis – The perspective of patients' associations
10 October 2023
14.30-15.00 Opening session
- Baiba Miltoviča, President of the Section for Transport, Energy, Infrastructure and the Information Society, European Economic and Social Committee
- Jaime Lafita, DalecandELA and Juan Carlos Unzué, former football player, ALS patient and ALS research activist
- Emilia M. Málaga Pérez, President of the Basque Economic and Social Council
- Gotzone Sagardui, Minister for Health, Basque Government
- Íñigo Urkullu, President of the Basque Country (video message)
15.00-16.00 Session 1: The role of patients’ organisations
Moderator: Ana Diaz-Emparanza Herrero, DalecandELA
- Mia Möllberg, Representative of ALS patients, Sweden
- Sara Calvo, Adela, Basque patients organisation
- Sabine Turgeman, Director General of the Association for research on ALS, France
- Luís Filipe Gonçalves da Silva, APELA - Rehabilitation Department, Portugal
- Evy Reviers, President, EUpALS
Debate
16.00-17.00 Session 2: State of play of research on ALS
Moderator: Rosario Sánchez Pernaute,Researcher, Biobizkaia Research Intitute, representing the Research and Innovation Directorate of the Basque Ministry for Health
- Jone López-Erauskin, University of California San Diego
- Vincenzo Silani, Director of the Department of Neuroscience and Director of the Experimental Neuroscience Laboratory at the IRCCS Italian Institute for Auxology
- Eduardo Jauregi,CEO, Irisbond
- Julian Grosskreutz, Chair of Precision Neurology, University of Lübeck, Germany
Debate
17.00-18.00 Session 3: Action at European level
Moderator: Antonio García del Riego, Member of the European Economic and Social Committee
- Stélios Kympourópoulos, Member of the European Parliament – About launching the new European ALS Coalition (video message)
- Andrea Gasper, EU ALS Coalition
- Raquel Barajas-Azpeleta, Head of the Research Department, Luzón Foundation
- Vinciane Quoidbach, European Brain Council
Debate
18.00-18.30 Closing remarks
- Izaskun Bilbao Barandica, Member of the European Parliament