March is Multiple Myeloma Awareness Month, and to keep the awareness going strong, we’re sharing our recent interview with PatientsLikeMe myeloma community member Bob, also known as AbeSapien. The happily-married, long-time data processing expert spoke about his diagnosis experience with myeloma, the economic effects of his condition and his passion for horseback riding. … Continue reading “Myeloma has not affected my day-to-day life” – PatientsLikeMe member AbeSapien shares his experience during Multiple Myeloma Awareness Month
“Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis
Several people in the PatientsLikeMe community use the phrase “new normal” after being diagnosed with pulmonary fibrosis (PF), and PF member John_R doesn’t’ think his new normal is all bad. This month, he chatted with us about getting diagnosed with PF, bringing oxygen to the workplace, and how living with his Sweetie keeps him focused… Continue reading “Life is good” – PatientsLikeMe community member John_R speaks about his new life after being diagnosed with pulmonary fibrosis
PatientsLikeMe launches “Data for Good” campaign to encourage health data sharing to advance medicine
Public Service Announcement-Style Video Calls Patients to “Donate Your Data for You. For Others. For Good” CAMBRIDGE, MA – March 10, 2014 – Today, PatientsLikeMe kicks off a new campaign promoting the value of sharing health information to advance research. In a series of public service announcement-style videos, the company highlights a movement called “data… Continue reading PatientsLikeMe launches “Data for Good” campaign to encourage health data sharing to advance medicine
“MS cannot stop you from living your life and following your dreams” – an interview with patient advocate and PatientsLikeMe member Starla Espinoza
Multiple Sclerosis Awareness Month is fast approaching in March, but we just couldn’t wait until then to share our recent interview with patient advocate and PatientsLikeMe member Starla Espinoza, also known as baebae. On top of being a PatientsLikeMe member since 2007, tracking her health and sharing experiences with the community, she’s also a blogger and… Continue reading “MS cannot stop you from living your life and following your dreams” – an interview with patient advocate and PatientsLikeMe member Starla Espinoza
PatientsLikeMe and Sage Bionetworks launch open science study for people with Parkinson’s Disease
Companies Partner With TED Fellow Dr. Max Little to Map the Severity of the Disease CAMBRIDGE, Mass.— February 5, 2014—PatientsLikeMe and the nonprofit research organization Sage Bionetworks announced today the launch of a new crowdsourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD… Continue reading PatientsLikeMe and Sage Bionetworks launch open science study for people with Parkinson’s Disease
Living with hope – An interview on AKU with Alycia and Nate
We’ve had the pleasure of talking with and featuring many PatientsLikeMe members on the blog over the years, but Nate is the youngest by far. He’s just 5 years old and is living with Alkaptonuria (AKU), a rare metabolic disease, sometimes called Black Bone Disease. Recently, we had the chance to chat with his mom,… Continue reading Living with hope – An interview on AKU with Alycia and Nate
Social media users say ‘yes’ to sharing health data
There are some new survey results that just came out from the Institute of Medicine’s Evidence Communication Innovation Collaborative (ECIC) that show social media users give the stamp of approval to sharing health data. (A big, public shout out to the more than 2,000 PatientsLikeMe members who participated in the survey.) It’s very exciting to… Continue reading Social media users say ‘yes’ to sharing health data
Achieving wellness: An interview on mental health with Dr. Murali Doraiswamy
Murali Doraiswamy is a Professor of Psychiatry and Behavioral Sciences at Duke University where he is also a member of the Duke Institute for Brain Sciences. He also serves as an advisor to government agencies and businesses. Dr Doraiswamy is the brain health advisor for Men’s Health magazine and serves on the World Economic Forum’s… Continue reading Achieving wellness: An interview on mental health with Dr. Murali Doraiswamy
Putting patients first: An interview with partners CoPatient and PatientsLikeMe
What’s this partnership all about? Michael- Every day on PatientsLikeMe, our members are sharing their real-world experiences. They’re getting real support from people just like them, people who get what it’s like to have their condition and be on that journey. In the forums, they chat about… Continue reading Putting patients first: An interview with partners CoPatient and PatientsLikeMe
“We can and will do better” – An interview on pulmonary fibrosis with Dr. Jeff Swigris
Just this past month, a few members of the PatientsLikeMe Team (Arianne, Dave and Rishi) traveled to La Jolla, CA for the Pulmonary Fibrosis Foundation Summit. It was quite the mixed crowd (with patients, clinicians and researchers), and it gave them (and everyone at PatientsLikeMe) a chance to learn more about pulmonary fibrosis (PF) from… Continue reading “We can and will do better” – An interview on pulmonary fibrosis with Dr. Jeff Swigris