Overview

• The national ELA law passed in October 2024 remains unfunded, delaying the release of €200 million earmarked for patient assistance.
• Hundreds of families and patients marched in Toledo and other cities to demand swift budget approval after more than 600 individuals died without receiving promised benefits.
• Last month’s Health Ministry decision greenlit Tofersen for patients with SOD1 gene mutations, covering roughly 2 percent of ELA cases.
• Regional governments in Valencia, Andalusia and Catalonia have launched emergency aid lines, set up multidisciplinary care units and allocated targeted budgets such as Valencia’s €700,000 fund.
• Psychological support hubs and peer groups are expanding to address the disease’s emotional toll and help patients maintain their quality of life.