Pub Date : 2019-02-01DOI: 10.1093/med/9780198796039.003.0023
F. Mancini, C. Colosimo
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.
{"title":"Advocacy for movement disorders","authors":"F. Mancini, C. Colosimo","doi":"10.1093/med/9780198796039.003.0023","DOIUrl":"https://doi.org/10.1093/med/9780198796039.003.0023","url":null,"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.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"60 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"2019-02-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"133213248","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Pub Date : 1900-01-01DOI: 10.1093/med/9780198796039.003.0033
T. Wijeratne, S. Crewther, D. Crewther
Stroke advocacy, defined as acting on behalf of stroke victims and families to promote their welfare policies that include education, clinical service development, and translational clinical research, is the key in improving stroke care globally. Stroke is the second commonest cause of death for people over 60 worldwide and is a leading cause of adult disability. It is estimated that each year 16 million people worldwide suffer a stroke, with approximately 6 million dying and another 5 million being left permanently disabled. Recent research also suggests that nearly 90% of all such stroke cases are preventable and treatable if seen rapidly. This chapter discusses the step-by-step effective stroke advocacy in setting up a state-of-the-art stroke service in a less privileged public hospital in Australia followed by stroke advocacy case studies from Canada, Europe, Latin America, Nigeria, and Sri Lanka. Key tips in effective stroke advocacy and nine steps to achieve changes are also discussed.
{"title":"Advocacy for stroke","authors":"T. Wijeratne, S. Crewther, D. Crewther","doi":"10.1093/med/9780198796039.003.0033","DOIUrl":"https://doi.org/10.1093/med/9780198796039.003.0033","url":null,"abstract":"Stroke advocacy, defined as acting on behalf of stroke victims and families to promote their welfare policies that include education, clinical service development, and translational clinical research, is the key in improving stroke care globally. Stroke is the second commonest cause of death for people over 60 worldwide and is a leading cause of adult disability. It is estimated that each year 16 million people worldwide suffer a stroke, with approximately 6 million dying and another 5 million being left permanently disabled. Recent research also suggests that nearly 90% of all such stroke cases are preventable and treatable if seen rapidly. This chapter discusses the step-by-step effective stroke advocacy in setting up a state-of-the-art stroke service in a less privileged public hospital in Australia followed by stroke advocacy case studies from Canada, Europe, Latin America, Nigeria, and Sri Lanka. Key tips in effective stroke advocacy and nine steps to achieve changes are also discussed.","PeriodicalId":383831,"journal":{"name":"Advocacy in Neurology","volume":"64 1","pages":"0"},"PeriodicalIF":0.0,"publicationDate":"1900-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"125399640","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
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