Overview

• The national ELA law enacted in October 2024 remains unfunded nine months later due to the absence of an approved state budget.
• A July 22 Real Decreto allocated €10 million—just 5% of the law’s envisioned resources—to ConELA for the most advanced cases.
• ConELA has not initiated the procurement process to hire providers, risking further delays beyond mid-October when regions meet to set implementation plans.
• In Andalucía only seven of the roughly 60 patients in the most advanced phase will receive support from the initial fund despite about 800 total ELA diagnoses in the region.
• Advanced ELA care typically requires 24/7 ventilator support, feeding tubes, tracheotomies and multiple professional caregivers, heightening families’ financial and emotional burdens.