Earlier this year, the University of Arizona hosted a unique meeting for scientists, policy makers, and law experts to explore the legal, ethical, and policy implications of personalized medicine. The opening keynote was by Dr. Lee Hartwell, 2001 Nobel Prize recipient in Medicine / Physiology and Director of the Fred Hutchinson Cancer Research Center and… Continue reading Personalized Medicine: Making It All About You
Category: ALS
It’s Official: Sharing Health Data Improves Outcomes
(Listen here to the PatientsLikeMeOnCallTM podcast on this topic) Last week the PatientsLikeMe R&D team published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR), the leading open access peer-reviewed journal on health care in the Internet age. The study aimed to find out direct… Continue reading It’s Official: Sharing Health Data Improves Outcomes
ALS Awareness 2010: A Four Year Journey With Our PALS
Four years ago this Spring, PatientsLikeMe launched the ALS community with very specific goals in mind – to help patients like you take control of your disease, share and learn from one another, have a voice in real-world research and inform the companies that make your drugs and can improve your care. Together, we have… Continue reading ALS Awareness 2010: A Four Year Journey With Our PALS
ALS Awareness Month: ALS Patients Are “In Motion”
Did you know there are more than 4,500 patients in the PatientsLikeMe ALS community sharing and learning from each other every day? Outside of our community, patients are also teaming up to raise awareness and money for ALS research. Here is a highlights video of ALS members who have participated in our PatientsLikeMeInMotionTM program, stepping… Continue reading ALS Awareness Month: ALS Patients Are “In Motion”
An Interview with DannyD to Kick-Off ALS Awareness Month
It’s ALS Awareness Month! Did you know there are more than 4,500 patients with ALS (PALS) in PatientsLikeMe’s flagship community? We’ll be updating you all month on what is being learned by and from our PALS, so stay tuned. To kick us off, here is an interview with one of our long-time, three-star members –… Continue reading An Interview with DannyD to Kick-Off ALS Awareness Month
PatientsLikeMe – Out & About and OnCall
The PatientsLikeMe team has been traveling around the globe recently talking about the power of real-world patient data in changing healthcare. You may have heard about our executives at industry conferences, government hearings, or even on TV. Highlights below. Last month, PatientsLikeMe Co-founder and President Ben Heywood was on Fox Business News talking about how… Continue reading PatientsLikeMe – Out & About and OnCall
Raising MS Awareness: Meet Ramilla…
At PatientsLikeMe, we believe in getting to know the person, not just the “patient.” That’s why we interview members each month in our newsletter to find out more about how they approach life. In honor of MS Awareness Month, we are pleased to share with you our recent interview with Ramilla, a three-star member of… Continue reading Raising MS Awareness: Meet Ramilla…
Where are the Cures?
An interview with Myelin Repair Foundation
PatientsLikeMe partner, Myelin Repair Foundation (MRF), is a nonprofit organization devoted to reducing the time it takes to discover and develop treatments for multiple sclerosis (MS) patients. Recently, the MRF launched a campaign called “Where are the Cures?” – a site dedicated to a greater understanding of the barriers slowing the discovery and development of… Continue reading Where are the Cures?
An interview with Myelin Repair Foundation
FDA’s New Guidance on Patient-Reported Outcomes
We’re big fans of patient-reported outcomes (PROs) here at PatientsLikeMe, defined by the Food & Drug Administration (FDA) as: “A measurement based on a report that comes directly from the patient about the status of a patient’s health condition without amendment or interpretation of the patient’s response by a clinician or anyone else.” The self-report… Continue reading FDA’s New Guidance on Patient-Reported Outcomes
Interview with Thomas Goetz
(author of The Decision Tree)
In March 2008, a story by Thomas Goetz appeared in the New York Times magazine about PatientsLikeMe (“Practicing Patients”). Thomas has now expanded on that reporting with a new book, The Decision Tree, that explores how new tools like PatientsLikeMe can help individuals engage in their health and make better, more informed choices. We asked… Continue reading Interview with Thomas Goetz
(author of The Decision Tree)