This is it, the last report in our 5-part series of seasonal surveys focused on uncovering the experiences our psoriasis members. Like the seasons before it, this summer more than 300 psoriasis community members added their voices to research to help everyone understand what it’s like to live with the condition. Thanks to everyone who… Continue reading Uncovering psoriasis with patients like you
Tag: PatientsLikeMe
World Psoriasis Day – Global access to treatment
The international community is coming together today to raise awareness about psoriasis, and this year’s theme for World Psoriasis Day is ‘global access to treatment.’ The International Federation of Psoriasis Associations (IFPA) includes almost 50 member associations around world, including the National Psoriasis Foundation (NPF) right here in the U.S. They’re helping to spread the… Continue reading World Psoriasis Day – Global access to treatment
Canary in a Coal Mine- Raising awareness for myalgic encephalomyelitis
Everyday on PatientsLikeMe, people just like you are sharing their experiences, contributing to real-time research and raising awareness, together. Jen is part of your patient community and is living with myalgic encephalomyelitis (ME), sometimes called chronic fatigue syndrome. She’s working on a new project called Canary in a Coal Mine to help shed light on this largely… Continue reading Canary in a Coal Mine- Raising awareness for myalgic encephalomyelitis
Trying to put insomnia to rest – An interview on sleep with insomnia patient and PatientsLikeMe member Marcia
As part of our “Are You Sleeping?” initiative, we’re talking with different patients to learn what it’s like to live with a lack of sleep and how that impacts their health. Recently, we caught up with Marcia, a PatientsLikeMe MS community member (some of you might know her as gamma) and happy grandmother of 3… Continue reading Trying to put insomnia to rest – An interview on sleep with insomnia patient and PatientsLikeMe member Marcia
Hypertension on the Open Research Exchange- A talk with pilot researcher Tamara Kear, PhD., R.N., CNS, CNN
We’ve been talking about the new PatientsLikeMe Open Research Exchange on the blog over the past few weeks, and today, we’d like to introduce another one of the pilot researchers. In case you haven’t heard, our researcher partners will be using ORE to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe… Continue reading Hypertension on the Open Research Exchange- A talk with pilot researcher Tamara Kear, PhD., R.N., CNS, CNN
We’ve got a new look!
You probably already noticed, but the PatientsLikeMe blog just got a facelift. It’s all part of our ongoing effort to create a better site experience, and the feedback we’re getting from members is guiding us every step of the way. Check out all the upcoming site upgrades in Kim Goodwin’s post. Like she says, “nearly… Continue reading We’ve got a new look!
PatientsLikeMe in real life: Reporting back from RARE Patient Advocacy Summit
I was in Newport Beach, CA with one of our founders Ben Heywood, Brad Gescheider from partner marketing, and 125+ caregivers, researchers, patients, and advocates—including a member of PatientsLikeMe! MS member since 2010 slowmo_tam joined me for a day full of tips on patient advocacy, empowerment, and collaboration at the RARE Patient Advocacy Summit. Ben was on a… Continue reading PatientsLikeMe in real life: Reporting back from RARE Patient Advocacy Summit
Sleep survey results: infographics take-3
Happy Friday! Here’s the final round of the PatientsLikeMe sleep survey infographics. On Tuesday, we shared info about general sleep issues, and on Wednesday, we learned how these problems affect the daily lives of people living with chronic conditions. Now, see how the PatientsLikeMe community compares to a study conducted by the National Sleep Foundation… Continue reading Sleep survey results: infographics take-3
Sleep survey results: infographics take-2
As promised, here’s the next round of PatientsLikeMe sleep survey infographics. Yesterday we shared some about general sleep problems and how long they last. Today, it’s all about how sleep impacts your sex life, ability to drive a car and overall mood. Don’t forget to share through #areyousleeping on Facebook, Twitter and Pinterest so everyone can learn… Continue reading Sleep survey results: infographics take-2
Sleep survey results: infographics take-1
Just yesterday, we announced the results of the PatientsLikeMe sleep survey and found that a bad night’s sleep is the norm for people with health conditions. Over the next week, we’ll be sharing some sleep survey infographics with our blog followers and the PatientsLikeMe community. Here are a few to kick us off… PS-… Continue reading Sleep survey results: infographics take-1