Amyotrophic lateral sclerosis (ALS) is a rapidly progressive, invariably fatal neurological disease. No present treatments can stop or reverse the disease, although Food and Drug Administration (FDA)-approved formulations may extend life by several months. As part of the information-gathering phase of a study on ALS, the National Academies Board on Health Care Services and Board on Health Sciences Policy cohosted a virtual public workshop series in August and September 2023 to identify key actions for the public, private, and nonprofit sectors to undertake to make ALS a livable disease within a decade. Speakers explored topics including access to high-quality, evidence-based ALS care, the lived experience of ALS, and ALS research and therapeutic development. This publication summarizes the presentations and discussion of the workshop.
National Academies of Sciences, Engineering, and Medicine. 2023. Amyotrophic Lateral Sclerosis: Accelerating Treatments and Improving Quality of Life: Proceedings of a Workshop—in Brief. Washington, DC: The National Academies Press.
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