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Amyotrophic Lateral Sclerosis: Accelerating Treatments and Improving Quality of Life

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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 News and Updates

Action Plan: Study Lifecycle Infographic

March 2023 Produce a report containing recommendations for key actions federal agencies, the pharmaceutical industry, and nongovernmental organizations can take to improve ALS treatment, care, services, and supports in the future June 2024 Acknowledge and address equity issues across the landscape April 2023—May 2024 Review the current state of therapeutic developement, care, services, and supports April 2023—May 2024 Care and services individualsand families need today Improving quality of life,health, and wellbeing Therapeutic interventions toprevent, treat, and cure ALS Convene a diverse committee ofexperts, including people with alived experience of ALS

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.

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