You’ll soon see some changes to the way PatientsLikeMe looks, including new icons, colors and fonts. This might look like we’re just redecorating, but these changes are fundamental to helping us make the bigger improvements you’ve been asking for. We’re still putting a bit of polish on it, but here’s an overview of what’s changing,… Continue reading More than a pretty face
Category: Patient Experiences
Did you know it’s Mental Illness Awareness Week?
The U.S. Congress has recognized the week of October 6th as Mental Illness Awareness Week (MIAW), and if you or anyone you know is living with a mental health or neurological condition, it’s time to raise awareness and share your experiences. Serious mental illnesses cover a lot of different conditions (including depression, schizophrenia and bipolar… Continue reading Did you know it’s Mental Illness Awareness Week?
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
Bad night’s sleep is norm for people with health conditions, according to PatientsLikeMe survey
Majority of Members Have Chronic Sleep Problems That Point to Insomnia, But They Aren’t Diagnosed With The Condition CAMBRIDGE, Mass.— September 23, 2013—Results from a new survey of 5,256 PatientsLikeMe members around the world reveal nearly one-third of respondents—people who live day to day with life-changing conditions—never (5%) or rarely (25%) get a good… Continue reading Bad night’s sleep is norm for people with health conditions, according to PatientsLikeMe survey
Restless Leg Syndrome/Willis-Ekbom Disease Awareness Day is on Monday
Did you know that PatientsLikeMe is located up in Boston? For us New Englanders, the end of September isn’t just about falling leaves and colder weather; it’s also about Restless Leg Syndrome (RLS) Awareness Day. On September 23rd, medical organizations all across the world will join together to raise awareness for this health condition, which affects… Continue reading Restless Leg Syndrome/Willis-Ekbom Disease Awareness Day is on Monday
The Open Research Exchange- A talk with pilot researcher William Polonsky, Ph.D., CDE
You’ve probably seen some recent posts about PatientsLikeMe’s new Open Research Exchange. Medical researchers will be using our ORE website to pilot, deploy, share and validate new ways to measure diseases. And PatientsLikeMe members will have an opportunity to give feedback on their work, putting them – the patients – at the center of new medical… Continue reading The Open Research Exchange- A talk with pilot researcher William Polonsky, Ph.D., CDE
Epilepsy “Rescue Medication” Survey results are in
PatientsLikeMe recently partnered with Acorda® Therapeutics to research how epilepsy patients respond to seizures using rescue medications, and we’re happy to announce that the results are in. Rescue meds are a type of medication used once a seizure starts to help end it faster or prevent further seizures. Has there been any 24-hour period in… Continue reading Epilepsy “Rescue Medication” Survey results are in