Affiliates
Rebecca English, Lyle Carrera, Ashley Bologna, and Joe Alper
National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on Health Care Services; Board on Health Sciences Policy
Summary
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.