| Summary: | 碩士 === 高苑科技大學 === 經營管理研究所 === 106 === Disease is an unpredictable and risky event for people. In particular, it is a rare disease caused by genetic defects - muscular dystrophy. Apart from suffering from life-threatening disease, it also faces many challenges. If we can provide and support to patients with the same disease during the illness, the panic and the lack of understanding of the disease will be less, and we can achieve better adaptability and even show extraordinary strength. However, the "Taiwan SMA Families" and the "Taiwan Muscular Dystrophy Association Taiwan Muscular Dystrophy Association" are a group of diseased and diseased patients. The main members of the group are patients and their families, as well as physicians and nurses, workers, physicists, physiotherapists, etc.serve patients to connect resources and improve the quality of life of their patients.
The research was conducted using qualitative research methods, supplemented by in-depth interviews and secondary data collection methods. The interviewees included social workers and disease patients of the disease societies. They had a deep understanding of the current of muscular dystrophy in the society, the patients had reached the goal of optimizing the quality of their own quality of life in relation to the assistance provided by the association, and how the association assisted parties in providing resources to provide patients and families with difficulties. The study finds that the Association’s lack of early resources is mainly to solve the most basic needs of the patients in a case-by-case manner. With the connection of services and the abundance of resources for more service use, it also positively links resources and promotes relevant organizations. The approach of the initiative allows the government, the State Health Administration, and others to find out that assistive devices have an important influence on the quality of life of disease patients; also allow society to better understand cognition of rare diseases, break through the previous framework for disease patients, and promote through associations. With the activities of the initiative, the self-worth consciousness of the patients can be better promoted. In addition, patients with muscular dystrophy in the field of employment are also the goals of the association for further assistance and development.
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