Have you met PatientsLikeMe member Jeff, also known as NinerFan? He has been living with interstitial lung disease (ILD) since 2004 and he recently took some time to share his journey with us. He spoke about everything from getting diagnosed to being a newlywed, and gave a great list of advice for others going through a… Continue reading “My new normal.” PatientsLikeMe member Jeff tells his personal journey with interstitial lung disease
Category: Patient Experiences
PatientsLikeMe selects first pilot users for Open Research Exchange™
Researchers and Patients to Test New Measures for Hypertension, Treatment Burden, Appetite and Diabetes, Primary Palliative Care CAMBRIDGE, Mass.— August 13, 2013—PatientsLikeMe has named the first four researchers and teams who will pilot test its new Open Research Exchange™ (ORE) platform. Supported by a $1.9 million grant from the Robert Wood Johnson Foundation, ORE was… Continue reading PatientsLikeMe selects first pilot users for Open Research Exchange™
Raising awareness for psoriasis, all year long.
As many of you out there know, August is National Psoriasis Awareness Month, but it’s not the only time of year that you’re helping shine a spotlight on this chronic, autoimmune disease. This year, we wanted to take a look back at all the ways your community, both inside and out of PatientsLikeMe, has helped… Continue reading Raising awareness for psoriasis, all year long.
Diabetes and stress- What the PatientsLikeMe diabetes community has to say
Here at PatientsLikeMe, we believe that sharing healthcare experiences is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. So, we wanted to share back with everyone some results from a recent diabetes survey that nearly 600 PatientsLikeMe community members took part in. Our members entered their responses to… Continue reading Diabetes and stress- What the PatientsLikeMe diabetes community has to say
PatientsLikeMe co-founder Jamie Heywood named to PharmaVoice Top 100
An MIT-trained mechanical engineer, Jamie entered the field of translational medicine when his 29 year old brother Stephen was diagnosed with ALS, or Lou Gehrig’s Disease. Today Jamie is a chief scientist and architect for PatientsLikeMe. Described by CNNMoney as one of the 15 companies that will change the world, Jamie co-founded PatientsLikeMe to ensure… Continue reading PatientsLikeMe co-founder Jamie Heywood named to PharmaVoice Top 100
“Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.
For our latest patient spotlight interview, we’re talking with Ted. Some of you may know him on PatientsLikeMe as sirsmedley’s and he’s been sharing his journey with the community since 2010. Ted was diagnosed with multiple sclerosis (MS) back in 2009 and he recently took some time to talk with us about a bunch of… Continue reading “Don’t try to do this alone.” An interview with multiple sclerosis patient and PatientsLikeMe member Ted.
Staying aware for UV Safety Month
It’s that time of year. We’re heading out on summer vacations, hitting the beaches and taking in some sun. But as we try to forget about all those work emails for an hour or two, we shouldn’t forget about sun safety. In fact, “skin cancer is the most common form of cancer in the United… Continue reading Staying aware for UV Safety Month
“Does anyone in healthcare want to be understood?” Sally Okun from PatientsLikeMe at TEDMED2013
It’s no secret that here at PatientsLikeMe, we think that the voice of the patient — your voice — is the number one way to drive medical advancements. At TEDMED 2013, our very own Sally Okun shared that message on one of the world’s largest stages. She asked the audience a very simple question. “Does… Continue reading “Does anyone in healthcare want to be understood?” Sally Okun from PatientsLikeMe at TEDMED2013
Are you sleeping? – Quick poll
We all know that sleep impacts our daily lives and overall well-being. Here at PatientsLikeMe, we want to learn more about how sleep affects your health, and how health affects your sleep. It’s all part of our ongoing “Are You Sleeping?” initiative, so take just a second to click the quick poll below and see… Continue reading Are you sleeping? – Quick poll
“Retooling my attitude.” An interview with idiopathic pulmonary fibrosis patient & PatientsLikeMe member Lori
As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Lori, an idiopathic pulmonary fibrosis (IPF) patient who started blogging about her journey back in October 2011. Her blog is… Continue reading “Retooling my attitude.” An interview with idiopathic pulmonary fibrosis patient & PatientsLikeMe member Lori