by Susannah Fox | 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...
by Susannah Fox | 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:...
by Susannah Fox | 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...
by Ileana Balcu | 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...
by Susannah Fox | 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...
by Ileana Balcu | 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...
by Susannah Fox | Jul 10, 2012 |
Big news today in the health geek world: CureTogether has been acquired by 23andme. For those just tuning in, CureTogether enables people to track and share their personal wellness experiments so that others can benefit from what they learn. 23andme enables anyone who...
by Susannah Fox | Jun 26, 2012 |
One year ago, I read a JAMA commentary that was so good I had to stand up while I was reading it: Are Patients Knights, Knaves, or Pawns? I blogged about it here (touching off a heated discussion) and started an email correspondence with one of the authors, Sachin...
by Ileana Balcu | Jun 22, 2012 |
Thanks to David Harlow for the heads-up to a contest for scholarships for patients to attend Mayo Clinic’s Social Media Summit: Excerpt: The Mayo Clinic Center for Social Media is offering an opportunity for patient advocates to attend its Social Media Summit...
by Ileana Balcu | Jun 20, 2012 |
Do you have the ideal healthcare network of individuals supporting your physical, mental, emotional, and spiritual aspects? Sally Richards does. She works with hospitals, neurofibromatosis (NF) organizations, government entities and patients in what she calls “a...
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