Real-world, clinical insights and patient engagement central to improving health outcomes WASHINGTON and CAMBRIDGE, MASS., November 9, 2015—The American College of Cardiology (ACC) and PatientsLikeMe have launched a partnership to explore innovative ways to make real-world patient feedback and experience more central to diabetes research and care. Focused on the ACC’s Diabetes Collaborative Registry®, the partnership… Continue reading The American College of Cardiology and PatientsLikeMe to Bring Patient Focus to Diabetes Research and Care
Epilepsy Awareness Month: The value in helping others
It’s November, which means it’s Epilepsy Awareness Month. During our #NotAlone campaign, we shared how PatientsLikeMe member Letitia’s experience on the site helped her feel less alone in living with epilepsy. Letitia (Letitia81), a member of our 2014-2015 Team of Advisors, explains: “I enjoyed connecting with others suffering from seizures and exchanged ideas about diagnostic… Continue reading Epilepsy Awareness Month: The value in helping others
Getting “Patients Included” right Part I: Two members attend a Kidney Health Initiative workshop
Back in August, the Kidney Health Initiative (KHI), a partnership between the U.S. Food and Drug Administration (FDA) and the American Society of Nephrology (ASN), held a workshop called “Understanding patients’ preferences: Stimulating medical device development in kidney disease.” But this was more than a workshop – it was an event centered around the idea… Continue reading Getting “Patients Included” right Part I: Two members attend a Kidney Health Initiative workshop
Shining a light on lung cancer
What began as one awareness day back in November of 1995 has grown into Lung Cancer Awareness Month, now in its 20th year, as the lung cancer movement expanded and activities increased. Lung cancer is the second most common cancer in both men and women, but is the leading cause of cancer death in the… Continue reading Shining a light on lung cancer
World Psoriasis Day 2015: Have hope, take action, make a change
Back in 2004, a group of patient associations from around the world launched World Psoriasis Day. Conceived by patients, for patients, World Psoriasis Day is an international event that aims to give a voice to the more than 125 million people worldwide living with psoriasis and psoriatic arthritis. On October 29, the International Federation of… Continue reading World Psoriasis Day 2015: Have hope, take action, make a change
A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease
Back in September, Sally Okun, Vice President of Advocacy, Policy and Patient Safety, and community moderator Molly Cotter, attended the FDA public meeting on Parkinson’s disease (PD) along with PatientsLikeMe member Gary (tupelo). We posted some interesting developments from the meeting in the forum, but we also caught up with Gary for his perspective on… Continue reading A patient’s perspective: member Gary reports back from the FDA public meeting on Parkinson’s disease
Raise your hand for Eczema Awareness Month
This month on the blog, we’ve already talked about Breast Cancer Awareness Month, Mental Illness Awareness Week and World Mental Health Day. Today, we’re keeping the awareness going strong by highlighting Eczema Awareness Month. Eczema (Atopic Dermatitis) may affect more than 30 million people in the U.S. So what is eczema, exactly? It’s an itchy,… Continue reading Raise your hand for Eczema Awareness Month
A day in the life of User Experience Designer Flavia Gnecco
By now, you’re probably familiar with our “Day in the life” series. But in case you haven’t had a chance to check it out, here’s a quick overview: members of the PatientsLikeMe community share a lot about their health journey and experiences on the site. In turn, we like to share stories from the PatientsLikeMe… Continue reading A day in the life of User Experience Designer Flavia Gnecco
PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships
Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 2015–2016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing… Continue reading PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships
#NotAlone Recap: On PatientsLikeMe, no one is alone…
As our #NotAlone campaign wraps up, we hope you’ve been encouraged by the thoughts and personal stories of how other members have felt less alone by learning, connecting and tracking on the site. We recently had a look at all the member posts in the #NotAlone forum and wanted to share some highlights with you!… Continue reading #NotAlone Recap: On PatientsLikeMe, no one is alone…