Skip to main content
Our Work

Amyotrophic Lateral Sclerosis: Accelerating Treatments and Improving Quality of Life

Completed

Topics

Amyotrophic lateral sclerosis (ALS) is a rapidly progressive, invariably fatal neurological disease. Individuals affected by ALS include those living with ALS, their caregivers, presymptomatic individuals at risk for developing ALS, and others. Currently no treatments stop or reverse the disease, although various FDA-approved formulations may extend life by several months. This committee will identify and recommend key actions for the public, private, and nonprofit sectors to undertake to make ALS a livable disease within a decade.

About Publications/Resources Past Events

Featured publication

Consensus

·

2024

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 commissi...

View details

Publications

Policy Brief

Role of the U.S. Congress

Policy Brief

These Policy Briefs identify the roles of CMS, Congress, and NIH in making ALS a livable disease in 10 years. Role of the Centers for Medicare & Medicaid Services Role of the National Institutes of Health Role of the U.S. Congress

Role of the National Institutes of Health

Policy Brief

These Policy Briefs identify the roles of CMS, Congress, and NIH in making ALS a livable disease in 10 years. Role of the Centers for Medicare & Medicaid Services Role of the National Institutes of Health Role of the U.S. Congress

Role of the Centers for Medicare & Medicaid Services

Policy Brief

These Policy Briefs identify the roles of CMS, Congress, and NIH in making ALS a livable disease in 10 years. Role of the Centers for Medicare & Medicaid Services Role of the National Institutes of Health Role of the U.S. Congress

Highlights

Supporting People with ALS

Highlights

These One Pagers highlight key points from the report, tailored to caregivers, people with ALS, genetic carriers at risk for ALS, and Veterans. Supporting Veterans with ALS Supporting Genetic Carriers with ALS Supporting Caregivers with ALS Supporting People with ALS

Supporting Caregivers with ALS

Highlights

These One Pagers highlight key points from the report, tailored to caregivers, people with ALS, genetic carriers at risk for ALS, and Veterans. Supporting Veterans with ALS Supporting Genetic Carriers with ALS Supporting Caregivers with ALS Supporting People with ALS

Supporting Genetic Carriers with ALS

Highlights

These One Pagers highlight key points from the report, tailored to caregivers, people with ALS, genetic carriers at risk for ALS, and Veterans. Supporting Veterans with ALS Supporting Genetic Carriers with ALS Supporting Caregivers with ALS Supporting People with ALS

Supporting Veterans with ALS

Highlights

These One Pagers highlight key points from the report, tailored to caregivers, people with ALS, genetic carriers at risk for ALS, and Veterans. Supporting Veterans with ALS Supporting Genetic Carriers with ALS Supporting Caregivers with ALS Supporting People with ALS

Lived Experience Consultant Biographies

Highlights

The National Academies’ Committee on Amyotrophic Lateral Sclerosis: Accelerating Treatments and Improving Quality of Life would like to acknowledge the volunteer consultants who have been appointed to meet with the committee and provide feedback on portions of the draft consensus study report.

Video on Living with ALS

Highlights

In this video, committee members, including an expert with lived experience, explain their vision for making ALS a livable condition within the next decade.

Subscribe to Email from the National Academies
Keep up with all of the activities, publications, and events by subscribing to free updates by email.