Advocacy for movement disorders

Abstract

Movement disorders refer to several conditions caused by a pathophysiological alteration of the basal ganglia nuclei and/or cerebellum with heterogeneous features mainly regarding control of voluntary movements and the presence of involuntary movements. Currently available treatments are mainly symptomatic and most of the diseases are chronic, causing a progressive downturn in the quality of life of both patients and their caregivers. Our description of advocacy in movement disorders starts from what most patients and caregivers do when looking for advocacy, they use search engines on the web. There are several organizations committed to advocating for people affected by movement disorders. The most representative organizations for each disease are listed in the present chapter, describing the ones with particular and original characteristics, being impossible to itemize all the associations dealing with advocacy in movement disorders. In general, these organizations are associations for patients, with a meso level of action, and are primarily based in the United States and northern Europe.