About a year ago, the PatientsLikeMe Parkinson’s disease (PD) community started something totally different: a study to compare the sound of their voices to their self-reported PD Rating Scale (PDRS) on PatientsLikeMe. It’s called the Patient Voice Analysis (PVA), and we teamed up with you, Max Little, Ph.D. and Sage Bionetworks to get it done.… Continue reading Update and results – the Patient Voice Analysis study
“Don’t go it alone” – IPF member Christine shares about her health journey
Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below,… Continue reading “Don’t go it alone” – IPF member Christine shares about her health journey
Q&A with Dan Barnes, CEO and Susan Gilmore, Executive Director, Community Engagement, FamilyWize
FamilyWize Community Service Partnership is committed to helping improve the health and well being of individuals and communities. High-cost prescription medications can be the cause of financial stress for uninsured or under-insured consumers. In fact, cost is the number one reason people do not take their prescribed medications, which impacts the short-term and long-term health… Continue reading Q&A with Dan Barnes, CEO and Susan Gilmore, Executive Director, Community Engagement, FamilyWize
PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS
TMurph58 is a longtime PatientsLikeMe member who is living with ALS. You may remember him from his 2012 interview, when he talked about the “Treat Us Now” movement and his experiences with ALS. We recently caught up with Tom, and he shared about his extensive advocacy efforts over the past few years, including his recent… Continue reading PatientsLikeMe member TMurph58 shares about his advocacy efforts and journey with ALS
What do you know about stress?
This April, some people aren’t thinking about stress – the crazy snows of winter are just about gone, flowers are blooming and temperatures are rising. But with these positive changes comes a responsibility to recognize the importance of stress and how it affects people’s health. Federal Occupational Health (FOH) has deemed April National Stress Awareness… Continue reading What do you know about stress?
PatientsLikeMe study monitors walking activity in people with MS
Cambridge, MA, April 15, 2015—PatientsLikeMe today announced results of a novel study conducted with Biogen that showed how people living with multiple sclerosis (MS) can use wearable activity tracking devices to collect and share their mobility data, which could potentially provide relevant information to their clinicians and to other MS… Continue reading PatientsLikeMe study monitors walking activity in people with MS
Bruce Cooper and Ed Godber talk about the AstraZeneca/PatientsLikeMe partnership
AstraZeneca and PatientsLikeMe announced today that they’re working together to use patient-reported data to shape future medicines and help improve patient outcomes. While it focuses on an initial set of four therapeutic areas (lupus, respiratory diseases, oncology and diabetes) the partnership signals a significant step forward for patients worldwide. Bruce Cooper, AstraZeneca’s Senior Vice President,… Continue reading Bruce Cooper and Ed Godber talk about the AstraZeneca/PatientsLikeMe partnership
PatientsLikeMe and AstraZeneca announce global research collaboration
Five-year agreement focused on improving health outcomes for patients across main therapy areas CAMBRIDGE, MA, April 13, 2015—In a major step forward to make patient-centric evidence a cornerstone of scientific discovery and development, PatientsLikeMe and AstraZeneca (NYSE: AZN) have signed a five-year agreement to provide access to PatientsLikeMe’s global network… Continue reading PatientsLikeMe and AstraZeneca announce global research collaboration
Recognizing the signs of IBS
Did you know that between 25 and 45 million people in the United States have IBS, but that many do not seek medical care for their symptoms?1 Are you one of them? Improved knowledge about IBS could lead to better treatments and care, and that’s why the International Foundation for Functional Gastrointestinal Disorders (IFFGD) has… Continue reading Recognizing the signs of IBS
Seeing [MS]: The invisible symptoms – balance
Describing her loss of stability and balance is difficult for Carol Cooke. One moment, she might be walking, and the next, she’ll fall to the ground. As she says, “I just want to get up and keep going,” but that’s not possible due to the symptoms of her multiple sclerosis (MS). Listen to Carol speak… Continue reading Seeing [MS]: The invisible symptoms – balance