Abstract:Background: Finding reliable information on one of more than 7,000 rare diseases is a major challenge for those affected. Since rare diseases are defined only by the prevalence criterion, a multitude of heterogeneous diseases are included. Common to all, however, are difficulties regarding information access. Even though various quantitative studies have analyzed the use of different information sources about rare diseases, still little is known about how users rate these sources and how their importance chang… Show more
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