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Can Social Media bring more public awareness to rare diseases, leading to more clinical studies?

– Geetha Ramaswamy

Social media platforms facilitate the sharing and discussion of topics and have the added advantage of proactively notifying and informing millions of interested users instantaneously as soon as any activity on that topic occurs. Since topics shared in social media are not expected to follow any academic writing standards, anyone is able to share information informally and quickly with the primary intention of relaying the information overriding how the message containing the information is being “worded”. As a result, social media disseminates information to every corner of the world, particularly the “common man”, bringing about prolific changes impacting the public good, that would otherwise happen at a snail’s pace.

By taking the appropriate actions and influencing the social media content, rare disease advocates for most rare diseases can seek to positively influence the increase in clinical studies for the same, thus leading to a better prognosis, orphan drugs and treatment for that disease.

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