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  • 學位論文

罕見疾病基金會議題倡導策略之研究

Research for the Issue Advocacy Strategies of Taiwan Foundation for Rare Disorders

指導教授 : 林淑馨
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摘要


本文以「罕見疾病基金會」為研究個案,其研究目的是希望透過「罕見疾病防治及藥物法及其後續修正案」在議題倡導策略上之運作,了解罕見疾病基金會在運用議題倡導策略上有何影響與差異,並發現彼此的異同之處。同時,透過與政府之間的溝通與協調,與在獲得政府的支持下,以產生符合公平正義與公共利益之法案。因此,本文著眼於「議題倡導策略」,採用文獻分析法與深度訪談法,進行非營利組織意涵與非營利組織議題倡導策略之概念等文獻探討,以建構本研究架構,並運用此一架構作為實證訪談之主軸,分別針對不同受訪者之意見,進行交叉分析與整理。 最後,藉由理論與實務對話,本研究最主要的發現包括了罕見疾病基金會從事議題倡導策略的「成功理由」與「待改進之處」。前者在於該基金會從立法到修法至今,因具備豐厚與完整的組織內部資源(包含人力資源、財力資源與組織目標);最重要的是,該基金會與政府長期以來一直維持良好的互動,使該基金會在從事議題倡導策略較一般非營利組織來得順暢。後者所指的待改進之處主要在於「缺乏社會大眾的連結」,其主要理由是因為自立法以來至今,該基金會認為僅靠組織內部的力量,仍可以達到議題倡導的目標。然事實上,沒有媒體的大量報導或社會大眾的持續關心與支持,很容易造成彼此不信任的關係,且也會引起政府部門對該基金會從事議題倡導目標之質疑。

並列摘要


The thesis aim to study on the Taiwan Foundation for Rare Disorders as model case. The research purpose is to find the identities and the differences of issue advocacy strategies which operating by Taiwan Foundation for Rare Disorders, base on the influences of Rare disease and orphan drug act and by later amendments. Meanwhile, the Taiwan Foundation for Rare Disorders try to promote the bill with fairness, justice and public interests through communicating and coordinating with the government, and even obtaining the government’s support. Thus, the content started from “issue advocacy strategies“, adopts the methods of literature review and of in-depth interview to analyse the literatures which contain the concept of nonprofit organizations or its’ issue advocacy strategies, to build up the conceptual framework. The empirical interviews can be worked under such framework to classify and cross-analyse the various interviewers’ opinion materials. With referring the dialogues between theory and practice, finally, the main findings conclude the “reason for success” and the “weakness need to be improved” of Taiwan Foundation for Rare Disorders’ issue advocacy strategies. The reason explains that the foundation possess abundant organization internal resources (it includes human resource, financial resource and the completely organization target). More important is that foundation mantain good interacts with the goverment for a long time, which helps it to promote the issue advocacy strategieits much smooth than any other nonprofit organization. And the weakness is result from “lacking the connection to public”. It because the foundation have confidence on itself to achive the goal of issue advocacy strategieits only by its own internal power, since the law have been set up. In fact, it may arouse the doubt in goverment’s supervision and easily lead to the untrust relationship between the foundation and the public, if without the mass media reports and the public continuous concern and support.

參考文獻


王美欣,2009,《倡議型非營利組織的公共關係策略研究》,國立臺灣大學政治學研究所碩士論文。
官有垣,2001,〈第三部門與公民社會的建構:部門互動的理論探討〉,《臺大社工學刊》,4:163-201。
曾敏傑,2004,〈病患權益倡導的參與式行動研究:以罕見疾病基金會為例〉,《東吳社會工作學報》,12:1-60。
顧忠華,1999,〈公民結社的結構變遷—以台灣非營利組織的發展為例〉,《台灣社會研究季刊》,36:123-145。
蕭新煌,2000,《非營利部門:組織與運作》,臺北:巨流圖書公司。

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