At any one time, at least 30,000 people in the U.S. are living with amyotrophic lateral sclerosis (ALS), a rapidly progressive, fatal neurological disease affecting individuals, caregivers, at-risk genetic carriers, and others. In 2022, Congress directed the National Institutes of Health to commission a National Academies committee of experts to recommend key actions public, private, and nonprofit sectors should take to make ALS a livable disease within the next 10 years. The resulting report, Living with ALS, focuses on an integrated ALS multidisciplinary care and research system to help facilitate earlier diagnosis and connections to specialty care.

Table of Contents

Front Matter Summary 1 Introduction and Study Context 2 Living with ALS Today 3 Making ALS Livable in the Near Term 4 Creating a Sustainable and Accessible ALS Clinical Care and Research System 5 Advancing ALS Research and Accelerating Therapeutic Development 6 Preventing ALS Appendix A: Public Session Agendas Appendix B: Biographical Sketches of Committee Members and Staff Appendix C: Disclosure of Unavoidable Conflicts of Interest