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Rare Disease Day 2013: Help Spread Awareness

by | Feb 28, 2013

A guest post by Wendy White, Founder & President of Siren Interactive Each year Rare Disease Day is celebrated worldwide on the last day of February. This year is even more special because it’s the 30th anniversary of the Orphan Drug Act, which provides incentives...

Sincerity in the storm (welcome to our world)

by | Nov 4, 2012

Hurricane Sandy “slapped the snark out of Twitter” for media reporter David Carr. In his column today, Carr discusses a newfound sense of community, which will sound familiar to anyone who uses social media to navigate an acute or chronic health condition:...

Medicine 2.0 Day One

by | Sep 16, 2012

My schedule only allowed me to attend Day One of the fantastically rich Medicine 2.0 Congress being held this weekend in Boston. I thought I’d share my impressions and notes in case they spark inspiration for other people, as each presenter and hallway...

About Healthcare’s Online Communities

by | Jul 25, 2012

From Hive Strategies, an interesting blog post talking about the healthcare”intimate public” – the communities that patients with a certain condition form with each other. An important part of being an e-patient is being engaged with others like...

Health Care Hackers

by | Jul 19, 2012

A few weeks ago, with a combination of alarm and excitement, I realized that I would be presenting my research about rare-disease communities to a roomful, not just a row full, of actual rare-disease patients and caregivers. This was no academic exercise. It was as if...

Social Media Breakfast – Healthcare in the Social Media Era

by | Jul 17, 2012

If you are in Boston this Friday, you can attend the Social Media Breakfast. The SPM member Alicia Staley will present the progress of the  #bcsm (breast cancer social media) community. Other speakers will be there as well and it only costs $8.00. For more details and...

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