A társadalmi média haszna és kára. A ritka betegségekkel való megküzdés offline és online térben
The Use and Misuse of Social Media. Coping with Rare Diseases in the Online and Offline Spaces

Summary/Abstract: The paper aims at presenting the special difficulties of patients from coping with rare diseases. Comparing the opportunities of accessing each other in the past and present the paper demonstrates how easy has become to share information to the patients as well as the other stakeholders in the online space. In contrast with self-help groups organized in the offline space, online associations have limited opportunity for personal support and there are no means to fence off manipulation, misinformation, and messages produced by robots.

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