ALS Side event programme

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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

18.30-19.00  Cocktail