Search Results for: Patient Voice

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. […]

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The Patient Voice- Fibromyalgia member Becca shares her story

  What does sharing about health experiences and donating #dataforgood mean to her? “I’m hoping that my contribution is going to help others who come behind me who have these conditions have an easier time of it.” -Becca If you missed our video interview with Ed, a Parkinson’s disease member, you can catch that here.

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The Patient Voice- Parkinson’s member Ed shares his story

  Back in March, we shared some of our infographics and videos on the blog, and as part of our #dataforgood initiative, PatientsLikeMe member Ed spoke about his experiences with Parkinson’s disease and why he thinks it’s all a group effort. Click above to watch his video, and keep an eye out for more interviews with

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Improving drug safety through the patient voice

At PatientsLikeMe we’re interested in bringing the voice of our patients to the attention of those who make drug products and to the regulators that approve them. Since 2008 we have conducted a series of projects to collect safety information from some of our member communities. We’ve worked with our pharmaceutical partners to help them

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PatientsLikeMe and Dr. Max Little Team Up to Advance Parkinson’s Research Through the Patient Voice

TED Fellows Call on Parkinson’s Patients to Help Screen, Monitor Disease Progression CAMBRIDGE, Mass. — December 3, 2012 —Today, Paul Wicks Ph.D., director of research for PatientsLikeMe, and Max Little, Ph.D., founder of the Parkinson’s Voice Initiative (PVI), kick off a partnership to advance Parkinson’s disease (PD) research through the sound of the patient voice.

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The Patient Voice Heard Loud and Clear at AHCJ ’11

Last week, we had the opportunity to be a part of the Association of Health Care Journalists (AHCJ) annual conference in Philadelphia, PA.  Carla Johnson, medical writer for the Associated Press, invited PatientsLikeMe to be part of her session entitled “Tapping into the e-patient phenomenon.”  It was a great opportunity for us to help healthcare

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Listen Up! Here Comes The Patient Voice

In addition to hearing from you through our PatientsLikeMe newsletters, we sometimes get a chance to meet you in person to hear what you have to say about living with your condition.   Here are two videos highlighting interviews we conducted in 2010 with patients just like you.  In the first video, you’ll hear directly

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The Patient Voice | Episode 5: A Little Elbow Grease and a “Can Do” Attitude

I don’t think about what I can’t do, I think about what I can do.  – Cher441 Over the past month, we’ve heard several stories about how PatientsLikeMe Parkinson’s Disease community members came together online and made a quilt that has traveled all around the world providing warmth, comfort and a sense of unity for

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