It’s rare that we’re surprised by the power of connection in the PatientsLikeMe community—we see members connect everyday and transform their lives through the exchange of information. This story extends beyond shared knowledge, though; it displays the powerful bonds of internet friends who offered truly life-changing support from opposite coasts. Below, listen to them tell… Continue reading Nola’s new bathroom
Tag: PatientsLikeMe
Throwback Thursday: Jamie talks about the future of medicine
It’s Throwback Thursday, so today we decided to share a talk our founder, Jamie Heywood, gave at the Government 2.0 Summit back in September 2009. He spoke about how we can better answer this question for patients: “Given my status, what is the best outcome I can achieve and how do I get there?” Watch what… Continue reading Throwback Thursday: Jamie talks about the future of medicine
Food for thought: August edition
Are you trying to lose weight in time for the fall? Or are you hoping to gain a few pounds instead? Weight fluctuation is a part of everyone’s life, and PatientsLikeMe members have been sharing about their weight management in the forum, everything from the Primal Blueprint 21-day diet to alternative substitutes for pasta and… Continue reading Food for thought: August edition
PatientsLikeMe (mid-year) news report
We’re halfway through summer here at the PatientsLikeMe Boston office, and it’s been a busy 2014 so far – from the launch of the Data for Good campaign to new collaborations with One Mind and Genentech. In case you missed anything, here are some of the highlights: In the news Innovators in Health Data… Continue reading PatientsLikeMe (mid-year) news report
PatientsLikeMe and Actelion to develop new patient-reported measure for mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL)
Patients To Share Their Experiences, Help Researchers Better Characterize Disease And Develop Treatment Strategies CAMBRIDGE, Mass.—August 5, 2014—PatientsLikeMe and Actelion Ltd. (SIX: ATLN) are partnering in a research initiative to create a new patient-reported outcomes tool for the rare form of non-Hodgkin’s lymphoma called MF-CTCL. The collaboration will leverage PatientsLikeMe’s Open Research Exchange (ORE), an… Continue reading PatientsLikeMe and Actelion to develop new patient-reported measure for mycosis fungoides-type cutaneous T-cell lymphoma (MF-CTCL)
“No oxygen.” PatientsLikeMe member Lori shares about life after surviving idiopathic pulmonary fibrosis
It’s crazy to think how fast things can happen. The last time we talked with Lori, she was telling us about life on the lung transplant list and playing what she called “the waiting waltz.” And now – everything has changed. Just two weeks after we posted her third interview on the PatientsLikeMe blog in… Continue reading “No oxygen.” PatientsLikeMe member Lori shares about life after surviving idiopathic pulmonary fibrosis
The Patient Voice- PF member Bryan shares his story
Since we announced #dataforgood back in March, many PatientsLikeMe members have been sharing about why they donate their own health experiences. Becca (fibromyalgia) and Ed (Parkinson’s) already shared their stories, and now we’re hearing from Bryan, an idiopathic pulmonary fibrosis (IPF) member. Check out his video above. Miss Becca or Ed’s? Watch them here.… Continue reading The Patient Voice- PF member Bryan shares his story
“In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 3
Over the past few months, Eleanor (redblack) has been sharing about her bipolar II on the blog, and today, we’re posting the final part of her series (thank you Eleanor for being so open and taking the time to share with everyone)! Eleanor talks about her relationship with her psychiatrist Jon and how they recently… Continue reading “In my own words” – PatientsLikeMe member Eleanor writes about her journey with bipolar II: Part 3
Patients as Partners: Managing High Blood Pressure questionnaire results
In this installment of our Patients as Partners blog series, we’re sharing results from the High Blood Pressure Management, Adherence, Attitudes and Health Behavior Instrument – whew, that’s a mouthful! Doctors and nurses can use the instrument to better understand how people manage high blood pressure at home, and can help everyone learn more about… Continue reading Patients as Partners: Managing High Blood Pressure questionnaire results
Keeping up awareness for PTSD
Back in the beginning of June, we posted about PTSD Awareness Month, and now, we’re keeping the awareness going strong for PTSD Awareness Day. To help put a face on PTSD, we shared a bunch of videos from AboutFace, a website produced by the National Center for PTSD that’s all about telling real stories… Continue reading Keeping up awareness for PTSD