Conference: Towards an Italian Coalition Against Amyotrophic Lateral Sclerosis

The conference “Towards an Italian Coalition against Amyotrophic Lateral Sclerosis” will be held in Rome. It represents a new collective commitment in favor of people and families living with ALS, on the initiative of Sen. Francesco Silvestro, in collaboration with OMaR – Rare Diseases Observatory, Havas PR, and the Association of Parliamentary and Legislative Initiative for Health and Prevention. The event is organized under the patronage of AISLA Onlus – Italian Association of Amyotrophic Lateral Sclerosis, ASLA Onlus – Association of Amyotrophic Lateral Sclerosis, AssiSLA Onlus in memory of Raffaella Alberici, Committee 16 November OdV, conSLAncio Onlus, Post Fata Resurgo ETS, and Viva la Vita ODV ETS, and with the non-conditioning contribution of Amylyx Pharmaceuticals.

The topic of neurodegenerative diseases, such as ALS, represents one of the great challenges for our society from a scientific, social, economic and political point of view: at a European level, the birth of the EU ALS Coalition represents a strong signal of taking charge of this challenge, which can be appropriately adapted to the specificities and needs of the Italian socio-health scenario. In order to stimulate a discussion between institutions, the scientific community and relevant patient associations, the idea of ​​this conference was born, dedicated to the creation of an Italian coalition that is responsible for finding shared solutions and giving a concrete response to the unmet needs of patients. The initiative will also be an opportunity to preview the results of the important survey, entitled “Amyotrophic Lateral Sclerosis (ALS) – Manifesto on the unmet clinical needs of patients and their families,” conducted by OMAR – Rare Diseases Observatory on the current situation relating to the pathology in Italy.