Key points
Summarizes the presentations, discussions, and questions from the virtual public workshop series that was hosted by the National Academies Board on Health Care Services and Board on Health Sciences Policy in August and September 2023.
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.