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Digital Media in Rare Diseases or “Knowledge Is Power”: The Role of EURORDIS in Creating Awareness and Diagnosing Rare Diseases
Abstract
This chapter focuses on the use of digital media by EURORDIS-Rare Diseases Europe and is specifically committed to understand its contribution to the awareness and diagnosis of rare diseases. To perceive the use of digital media and role in creating awareness of rare diseases, the contents of its website and Facebook page were analyzed. In specific, a promotional video of EURORDIS and a collection of 12 videographically documented stories from 2018 and 2019. The results show the use of various types of content and inherently practices, such as information, clarification, personalization, support, appeal, and empowerment, and of several rhetorical resources. In the dimension of pathos, the author finds elements that motivate awareness and inspire the receiver. Some elements of the logos used are credibility of sender(ethos), testimony (ethos), description of disease and identification of symptoms, exemplification and personalization, factual data, statistic data, and the use of metaphors and repetition.
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