The economic impact of ALS
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Updated: Aug 23, 2026

A Protocol for Comprehensive Assessment of Bulbar Dysfunction in Amyotrophic Lateral Sclerosis (ALS)
Published on: February 21, 2011
1National Organization for Rare Disorders, New Fairfield, CT 06812-8923, USA.
Abstract:
ALS is a progressive degenerative neuromuscular disease for which there is no known cause, treatment, or cure. The steady disease progression of muscle weakness eventually causes paralysis, disabling the patient. Day-to-day patient care and management most frequently fall to family members. The resultant financial burden can be enormous. We review financial issues related to the diagnosis, management of disease progression, and issues of life support. Cost-effective solutions are discussed. It is believed the key to reduction of costs is education of the health care community, patients and families, and third-party payers.
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