Tag: PatientsLikeMe

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

Patient-focused organizations join forces to build awareness and participation

The innovative medical research philanthropy Cures Within Reach has announced a marketing partnership with PatientsLikeMe to work together to improve patient lives. Sep. 10, 2013 – SKOKIE, Ill — Cures Within Reach, a non-profit focused on research to repurpose existing compounds for new and immediate use, and PatientsLikeMe, a patient network and real-time research platform, are… Continue reading Patient-focused organizations join forces to build awareness and participation

“I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn

Do you know what alkaptonuria (AKU) is? If you don’t, you’re not alone. AKU is a rare but devastating condition that causes severe, early onset osteoarthritis. It also causes cardiovascular problems, such as heart disease, kidney, bladder and prostate stones and other serious health complications. AKU is so rare that it’s estimated to only affect… Continue reading “I do not want your pity. I just want understanding.” An interview with alkaptonuria patient and PatientsLikeMe member Carolyn

The Open Research Exchange- A talk with Paul Tarini and Ben Heywood

Founded on a philosophy of “openness,” PatientsLikeMe aggregates patient-reported data from over 200,000 members on 2,000 diseases, analyzes them and shares the results with healthcare and life science companies to accelerate research and develop more effective treatments. With support from the Robert Wood Johnson Foundation, we’re now building the Open Research Exchange (ORE) so that researchers, clinicians,… Continue reading The Open Research Exchange- A talk with Paul Tarini and Ben Heywood

PatientsLikeMe creates largest open registry of IPF patients in the world

Community One of Website’s Fastest Growing; Reveals Real-World Picture Of Daily Life With the Rare Lung Disease CAMBRIDGE, Mass.— August 22, 2013—In a few short months, PatientsLikeMe has created the largest open registry of idiopathic pulmonary fibrosis (IPF) patients online, and some of the most current patient-reported data on the disease. The information the community… Continue reading PatientsLikeMe creates largest open registry of IPF patients in the world

PatientsLikeMe selects first pilot users for Open Research Exchange™

Researchers and Patients to Test New Measures for Hypertension, Treatment Burden, Appetite and Diabetes, Primary Palliative Care CAMBRIDGE, Mass.— August 13, 2013—PatientsLikeMe has named the first four researchers and teams who will pilot test its new Open Research Exchange™ (ORE) platform. Supported by a $1.9 million grant from the Robert Wood Johnson Foundation, ORE was… Continue reading PatientsLikeMe selects first pilot users for Open Research Exchange™