The winter months can mean dry air, less sunlight, indoor heating, and heavy clothing – not the best conditions for people living with psoriasis. As part of our continuing seasonal series, we conducted a survey of our psoriasis community between October and March, receiving responses from over 500 patients. We asked everything from, “How does… Continue reading Psoriasis in winter: what we’ve learned
Tag: PatientsLikeMe
With you every step of the way- PatientsLikeMeInMotion
Many of you are helping to raise awareness about your conditions. You’re not only encouraging support and donations, you’re spreading knowledge and eliminating stigmas. We want to help support your disease awareness efforts too, with PatientsLikeMeInMotionTM. Over the years, we’ve sponsored hundreds of fundraising teams through our PatientsLikeMeInMotion program. Let us sponsor your team next… Continue reading With you every step of the way- PatientsLikeMeInMotion
Raising Awareness for Parkinson’s Disease
Did you know that four to six million people have Parkinson’s disease (PD) worldwide? And that 50,000-60,000 new cases of PD are diagnosed each year in the US?[1] April is Parkinson’s Awareness Month and there are more ways than ever for you to “Join the Fight” against this neurodegenerative brain disorder. The Parkinson’s Disease Foundation… Continue reading Raising Awareness for Parkinson’s Disease
New To the PatientsLikeMe Team: Kim Goodwin, UX Expert
This week PatientsLikeMe announced two new appointments to the team: Kim Goodwin and Sally Okun. Here Kim, one of the world’s leading user experience (UX) experts, shares her thoughts about why she’s joined the company, and what she hopes to accomplish on the website for members. You’ll hear from Sally too, later this week. What… Continue reading New To the PatientsLikeMe Team: Kim Goodwin, UX Expert
PatientsLikeMe Names Kim Goodwin and Sally Okun to New Web and Patient Advocacy Positions
CAMBRIDGE, Mass.— March 19, 2013—PatientsLikeMe appoints Kim Goodwin and Sally Okun RN to two newly-created positions that will keep patient needs upfront as the company continues to enhance its website and drive industry and government to make more patient-centric decisions. Kim Goodwin has been named Vice President (VP) of User Experience (UX) and Sally Okun has… Continue reading PatientsLikeMe Names Kim Goodwin and Sally Okun to New Web and Patient Advocacy Positions
“Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant
“Short of Breath? See your Doctor,” said the poster in the pharmacy. I’d been short of breath for some time, but put it down to an unhealthy lifestyle, being 58 and being overweight. The poster encouraged me to visit my doctor, which I did. He sent me for a chest X-ray and I could tell… Continue reading “Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant
PATIENTSLIKEME AND BOEHRINGER INGELHEIM ESTABLISH HEALTH INFORMATION COLLABORATION FOR PATIENTS WITH IDIOPATHIC PULMONARY FIBROSIS
CAMBRIDGE, Mass. — February 28, 2013—On Rare Disease Day®, PatientsLikeMe announces a new collaboration with Boehringer Ingelheim to enhance its online patient community for people with idiopathic pulmonary fibrosis (IPF), a rare lung condition with no known cause, treatment or cure. Through a customized experience on PatientsLikeMe, IPF patients can now monitor their health and… Continue reading PATIENTSLIKEME AND BOEHRINGER INGELHEIM ESTABLISH HEALTH INFORMATION COLLABORATION FOR PATIENTS WITH IDIOPATHIC PULMONARY FIBROSIS
Creating an Open-Access Platform for Patients: An Interview with Jamie Heywood and Paul Tarini
RWJF has awarded PatientsLikeMe a $1.9 million grant to create the world’s first open-participation research platform to develop patient-centered health outcomes. The new platform will be linked with the PatientsLikeMe network to help researchers develop health outcome measures that better reflect patients’ experiences with a disease, and assess health and quality of life in ways… Continue reading Creating an Open-Access Platform for Patients: An Interview with Jamie Heywood and Paul Tarini
RWJF AWARDS $1.9 MILLION GRANT TO PATIENTSLIKEME TO CREATE WORLD’S FIRST OPEN RESEARCH PLATFORM TO DEVELOP PATIENT-CENTERED HEALTH OUTCOME MEASUREMENTS
Real-time health learning system will generate health outcome measures that are meaningful to patients and align medical research with patient needs February 25, 2013—Long Beach, CA—PatientsLikeMe has been awarded a $1.9 million grant from the Robert Wood Johnson Foundation (RWJF) to create the world’s first open-participation research platform for the development of patient-centered health outcome… Continue reading RWJF AWARDS $1.9 MILLION GRANT TO PATIENTSLIKEME TO CREATE WORLD’S FIRST OPEN RESEARCH PLATFORM TO DEVELOP PATIENT-CENTERED HEALTH OUTCOME MEASUREMENTS
Living with Psoriasis: PatientsLikeMe Member Lissa Featured on Patient Power
“I don’t really know too many people around here with psoriasis. It was hard to relate with somebody. My family, my friends, my husband, they’re great support, but they can only see what I’m going through, they can’t go through it the way I do. It’s really important to be able to connect with people… Continue reading Living with Psoriasis: PatientsLikeMe Member Lissa Featured on Patient Power