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Advocacy in amyotrophic lateral sclerosis 

Advocacy in amyotrophic lateral sclerosis
Chapter:
Advocacy in amyotrophic lateral sclerosis
Author(s):

Albert C. Ludolph

DOI:
10.1093/med/9780198796039.003.0021
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date: 22 August 2019

Amyotrophic lateral sclerosis (ALS) is among the most severe neurological conditions which leaves the patient in a speechless (deefferentiated) state. Advocacy is yielded to give patients a voice and to recognize patient’s actual preferences and needs. The chapter reviews the most important levels where advocacy is required: the affected families, professionals, the public, and health and science politics. When advocacy is performed in a considerate and thoughtful manner, patient’s coping mechanisms can be activated and quality of life can be secured to facilitate life in dignity; caregiver’s burden can be substantially reduced. For the public and scientific world, advocacy may lead to more efficient therapeutic approaches and allows for patient-centred care.

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