ALS Side event information

On 10 October 2023, the day before the Conference on Rare diseases and the European Reference Networks, the European Economic and Social Committee organised a side event on a neurodegenerative disease Amyotrophic lateral sclerosis (ALS) in cooperation with the authorities of the Basque Country.

The aim of the event was to raise awareness about ALS and its impact on the life of patients and their families, review the progress made in research to provide better treatment and better care, and inform on actions developed at European level, such as the EU ALS Coalition.

The event was split in three thematic blocks: The role of patients’ organisations, State of play of research on ALS and Action at European level.

It brought together patients' associations, researchers, health managers and policymakers including the European Parliament, Minister for Health in the Basque Government and the Basque Economic and Social Council.