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Consensus Study Report
Living with ALS
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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.

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Suggested Citation

National Academies of Sciences, Engineering, and Medicine. 2024. Living with ALS. Washington, DC: The National Academies Press. https://doi.org/10.17226/27739.

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Publication Info

190 pages |  6 x 9 | 

ISBNs: 
  • Prepublication:  978-0-309-72237-7
  • Paperback (forthcoming):  978-0-309-71801-1
DOI: https://doi.org/10.17226/27739
Chapters skim
Front Matter i-xvi
Summary 1-12
1 Introduction and Study Context 13-34
2 Living with ALS Today 35-52
3 Making ALS Livable in the Near Term 53-76
4 Creating a Sustainable and Accessible ALS Clinical Care and Research System 77-110
5 Advancing ALS Research and Accelerating Therapeutic Development 111-138
6 Preventing ALS 139-150
Appendix A: Public Session Agendas 151-160
Appendix B: Biographical Sketches of Committee Members and Staff 161-170
Appendix C: Disclosure of Unavoidable Conflicts of Interest 171-174

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