| Summary: | 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.
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