Social networking is the new frontier for recruiting rare disease patients for research. With the Precision Medicine Initiative underway, scientists, patients, and doctors are all connecting to make advances in genetic research that will lead to earlier detection, more accurate diagnostics, safer treatment options, and some day a cure. Patients are also connecting with support groups, advocates, peers in the chronic illness communities, and experts from around the world online. We can share our questions, concerns, encouragement, advice, medical information, and even our genetic data and diagnostic tests for Open Access research.
While many patients are wary of losing their privacy, I personally feel that contributing to advancing science to help the entire human race is more important.
The world is smaller than it has ever been. This observation reflects how the Internet and social media have strengthened our ability to connect with people and maintain those connections regardless of our physical distance. We have used social media to revive dormant friendships, make friends on the other side of the world, and expand our networks far beyond what was once possible.
Social media has also enabled us to document our connections, resulting in a “virtual rolodex”. We now have the ability to find almost anybody in the world through the mutual friends and connections that we have on Facebook, Twitter, LinkedIn, and Instagram, among others.
Stanley Milgram’s “Six Degrees of Separation” law states that we are between 5 and 6 connections removed from anybody in the world. So if my friend is 1 degree removed, and my friends friend is 2 degrees removed, I am only 3-4 more…
View original post 288 more words