22 January 2012

World Rare Disease Day, Grand Rounds, and The Afternoon Nap Society's Healthcare & Social Media Mashup

A special collaboration among the RARE Project, Grand Rounds, and The Afternoon Nap Society will use social media to connect patients and healthcare providers while raising awareness of World Rare Disease Day.

As a rare disease patient and healthcare blogger, I saw a unique opportunity to facilitate this collaboration, which will bring RARE Project’s rare disease blog hop together with Grand Rounds, an online collection of each week’s best in healthcare blogging. As a participant in the RARE Project’s Jan. 30 blog hop and as host of the week’s edition of Grand Rounds, The Afternoon Nap Society will serve as crossroads for readers. Those readers following RARE Project blog hop posts will be linked to Grand Rounds’ featured posts, and those readers who follow Grand Rounds will be linked to the RARE Project blog hop as one of the weekly edition features. “Grand Rounds has always sought to highlight the best of the healthcare blogging community, and the RARE Project’s mission is certainly worthy of recognition and acclaim,” said Nick Genes, MD, PhD, who is Grand Rounds’ founder and a resident in the Emergency Medicine program at Mount Sinai Hospital in New York City. “This collaboration represents a rare opportunity to align goals. We’re thrilled to be working together.”

This collaboration has the potential to bring together bloggers from around the globe to raise awareness of World Rare Disease Day, held on Feb. 29, and facilitate the exchange of information and ideas among healthcare professionals, patients, advocates, caregivers, and journalists. It is yet another testament to the fact that social media has emerged as the new frontier in medicine. Its rapid, interactive format and global reach provides healthcare professionals and patients with the ability to exchange information and ideas with an audience that is larger, more diverse, and more widely geographically distributed than traditional face-to-face interaction ever would allow.

It is my hope that this collaboration among The Afternoon Nap Society, the RARE Project, and Grand Rounds will help others use social media to breakdown geographic borders, make connections with one another, and learn more about the rare disease community. Whereas patients with more common diseases such as cancer or diabetes stand a very good chance of knowing someone who has been affected, a rare disease patient — particularly one who lives outside a highly-populated metropolitan area — may be the only patient with his or her diagnosis at a doctor’s practice. I know I am. Social media helps reduce the isolation rare disease patients may experience. I was fortunate that shortly after my diagnosis with intimal fibromuscular dysplasia, I connected with another fibromuscular dysplasia patient on the Mayo Clinic’s discussion forums. That connection resulted in additional connections around the world, and now I have a online community of patients and healthcare providers that I consider to be family as much as friends. As a group, we are making rare feel so much less alone.

For more information about RARE Project, visit rareproject.org, or to sign up to participate in the RARE Project’s blog hop, email bloggers@rareproject.org by Jan. 23. Discover more about Grand Rounds at getbetterhealth.com/grand-rounds. To learn more about how to submit a post for the special collaboration edition of Grand Rounds, click here. Please also follow @RAREproject, @grandrounds, and @afternoonnapper on Twitter, and find us all on Facebook too.

2 comments:

  1. Nice thought/ Does afternoon nap causes harmful to health?

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  2. Thank you for sharing your story in honor of Rare Disease Day. My son Gage passed away from a rare genetic disease called early-onset LAL deficiency (also known as Wolman disease) in 2009. It is so important to be an advocate and speak up for our loved ones. My hope is that someday other families will not have to go through what we did, which is why I founded LALSolace -- a support group for people and families affected by LAL deficiency. I wish your family well! Mary http://www.lalsolace.org

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