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

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

It’s Global Pulmonary Fibrosis Awareness Day!

Do you know someone with pulmonary fibrosis? Thanks to the Pulmonary Fibrosis Foundation, today – Sept 7th – is dedicated to raising awareness about this condition and sharing the stories of patients living with PF. It’s Global Pulmonary Fibrosis Awareness Day, and we want to do our part to help raise awareness of this lung condition. Pulmonary… Continue reading It’s Global Pulmonary Fibrosis Awareness Day!

“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