Support Reauthorization of ACT for ALS

ACT for ALS was designed to accelerate progress on two fronts: it strengthens the national ALS research infrastructure so discoveries move faster and more efficiently, and it expands access to investigational therapies for people who can't enroll in traditional clinical trials—while generating real-world evidence along the way.

The Issue: ACT for ALS is time-limited. Without reauthorization, key infrastructure efforts will be disrupted and evidence-generating Expanded Access Programs will wind down. That means less shared data, fewer coordinated resources to support biomarker and natural history research, and fewer pathways for patients outside the clinical trial system to access investigational therapies while contributing to the evidence base.

The Solution: Reauthorize ACT for ALS: Reauthorization keeps the national research backbone in place—open data resources, shared standards and tools, and coordinated natural history and biomarker efforts that feed into shared repositories—so researchers and companies can build on what’s already been created rather than starting over. It also preserves NIH-supported, evidence-generating Expanded Access Programs that pair access with structured learning to inform what comes next in therapy development.

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