Social Media and Orphan drugs

January 18, 2011

Social Media now provides a niche for every group of people with like minded ideas, needs and philosophies. Thanks to increasingly sophisticated social media, search tools and databases, patients are able to be informed and connect with others. Skype ,Blogs , Twitter, Facebook and Flickr provide ample opportunities to connect with stakeholders in the orphan drug scenario.Paradoxically, the amount of information and exchange opportunities on the web can be overwhelming and increasingly difficult to exploit. Although it is now extremely easy to access information on the net it has also become necessary to validate that information and exert caution in relying on unverified blogs and posts.
Patients and their families can keep abreast of specific areas of interest via newsletters, subscriptions and tools such as RSS feeds, bookmarks, Google lists and search clouds.
Governments are also participating in social media through RSS feeds of the European Medicines Agency (EMA) and US Food & Drug Agency (FDA) websites and the FDA’s “Track” system, where one can follow anything that passes through FDA through an e-mail alert system. (Tejada, 2010)

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Olivier Laurent


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