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
Category: Patient Experiences
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
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…
“I’m happy to say that I’ve made tremendous progress” – An interview with PTS and TBI member Trevor
Trevor Martin, a Veteran of the United States Army was deployed to Afghanistan twice from 2009 to 2012 and was later diagnosed with both a mild TBI and PTS. He joined PatientsLikeMe to connect with others living from these conditions. Our friends over at PatientsLikeMe sat down with Trevor to learn more about his life… Continue reading “I’m happy to say that I’ve made tremendous progress” – An interview with PTS and TBI member Trevor
World Mental Health Day 2015: What does dignity mean to YOU?
Mental illness affects people in every corner of our global community. Thousands with mental health conditions around the world can face discrimination, stigma, and emotional and physical abuse in mental health facilities. Additionally, many receive poor quality of care due to dilapidated facilities and lack of qualified health professionals.[1] The theme for this year’s World… Continue reading World Mental Health Day 2015: What does dignity mean to YOU?
The highs and lows of bipolar disorder
Since it’s still Mental Illness Awareness Week, we thought we’d share some facts on bipolar disorders, found in this dynamic infographic. Read our previous post for more information on how to get involved during this year’s awareness week – and all year long. Did you know bipolar disorder is a worldwide condition? In Australia there… Continue reading The highs and lows of bipolar disorder