by Alicia Staley | Aug 25, 2013 |
SPM member Erin Moore (@EKeeleyMoore) is one heck of an activist parent. She sees the future, she has a stake in it – a kid with a chronic disease – and like many of us, she’s not waiting around for someone else to make it happen: she’s engaged... by Susannah Fox | Jul 19, 2013 |
Susannah: On June 14, 2013, I attended the National Meeting on Promoting and Sustaining Collaborative Networks in Pediatrics where we discussed topics covered in a special issue of Pediatrics, among other initiatives and trends. Justin Vandergrift was one of the... by Eve Harris | May 1, 2013 |
SPM member Jody Schoger’s post “Cancer: Part Two” at her blog Women with Cancer landed with a big thud on April 26. Schoger was recently diagnosed with metastatic breast cancer. She’s a co-founder of #bcsm (breast cancer social media), one of the highest... by e-Patient Dave | Mar 30, 2013 |
Well well well, dare I say the times are changing? Not long ago all we ever heard was “Stay off the internet.” But a friend just said his endocrinologist and his radiologist BOTH recommended ThyCa.org to him! (Twitter: @ThyCaInc) It’s “created... 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...
SPM on TV in Hartford after last week’s “Better Health” conferenceJune 13, 2018
Give Me My DaM Data::The RevolutionJune 10, 2018
Skeptics ask why patients would even WANT their medical images. We asked on Facebook.June 5, 2018
Cinderblocks 2018May 27, 2018
You Don’t Have to be Alone to be LonelyMay 23, 2018
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