It’s the 10-year anniversary of the MS community, and we’re sharing a story from one of our members, Jackie (OldSalt). Jackie was diagnosed with relapsing-remitting multiple sclerosis (RRMS) in 2007 and more recently, her condition transitioned to secondary progressive MS (SPMS). She found PatientsLikeMe in 2008 and believes that being part of the site over… Continue reading “There were so many people asking the things that I was too afraid to ask”
Tag: community
Meeting PF patients where they are
Say hello to John (John_R), a father, grandfather and idiopathic pulmonary fibrosis (IPF) survivor. Sound familiar? Last year he shared his story about life after a double lung transplant and the importance of considering a lung transplant early. This year, John started a Facebook group to live-stream pulmonary fibrosis (PF) support group meetings and conferences.… Continue reading Meeting PF patients where they are
Data donations make wishes come true
Back in December 2014, the PatientsLikeMe community donated 450,000 health data points during the 24 Days of Giving campaign, and a special thanks to everyone who participated and have continued to donate their data for good. Every donation made wishes come true for children with life-threatening medical conditions, and on behalf of the community, PatientsLikeMe made… Continue reading Data donations make wishes come true
Q & A with Dr. David Casarett, author of “Stoned: A Doctor’s Case for Medical Marijuana”
If you’ve been following the blog lately, you might already know Dr. David Casarett – he’s a professor at the University of Pennsylvania’s Perelman School of Medicine and the author of “STONED: A Doctor’s Case For Medical Marijuana.” He recently worked with PatientsLikeMe on a survey that asked members how they felt about marijuana, and… Continue reading Q & A with Dr. David Casarett, author of “Stoned: A Doctor’s Case for Medical Marijuana”
Results From PatientsLikeMe Survey Highlight Patient Beliefs About Medical Marijuana
Cambridge, MA, July 14, 2015—A new survey of 219 PatientsLikeMe members has found that patients with certain conditions who use medical marijuana believe it is the best available treatment for them, with fewer side effects than other options and few risks. The survey, conducted in June 2015, is among the first to gauge patient perceptions… Continue reading Results From PatientsLikeMe Survey Highlight Patient Beliefs About Medical Marijuana
Chris Hannah, founder of CHSG, talks cluster headaches, clinical trials and more
In the beginning of June, we posted about National Headache and Migraine Awareness Month, and today, we’re continuing the conversation with Chris Hannah, the founder of Cluster Headache Support Group (CHSG). He recently sat down for a PatientsLikeMe blog interview, and he spoke at length about everything related to cluster headaches. Below, read what he… Continue reading Chris Hannah, founder of CHSG, talks cluster headaches, clinical trials and more
Patient, caregiver, wife and mother – Georgiapeach85 shares about her experiences with MS and her husband’s PTS
Ashleigh (Georgiapeach85) is a little bit different than your typical PatientsLikeMe member – not only is she living with multiple sclerosis, she also a caregiver for her husband Phil, who has been diagnosed with PTS. In her interview, Ashleigh shares her unique perspective gained from her role as a patient and caregiver, and how PatientsLikeMe… Continue reading Patient, caregiver, wife and mother – Georgiapeach85 shares about her experiences with MS and her husband’s PTS
Recapping with our Team of Advisors!
Many of you will remember meeting our inaugural Team of Advisors from when we first shared about this exciting team last year! This group of 14 were selected from over 500 applicants in the community and have been incredible in their dedication and desire to bring the patient voice directly to PatientsLikeMe. As the team… Continue reading Recapping with our Team of Advisors!
PatientsLikeMe and the FDA Sign Research Collaboration Agreement
WASHINGTON D.C., June 15, 2015—PatientsLikeMe and the U.S. Food and Drug Administration (FDA) have signed a research collaboration agreement to determine how patient-reported data can give new insights into drug safety. Under the collaboration, PatientsLikeMe and the FDA will systematically explore the potential of patient-generated data to inform regulatory review activities related to risk assessment… Continue reading PatientsLikeMe and the FDA Sign Research Collaboration Agreement
PatientsLikeMe usability study for mobile app
Designing a new app is like designing a car. Your engineer and designer may have done a flawless job, but nothing matters until the person actually steps into the driver’s seat and test-drives the product. So when it came time for us to launch the first pass at our new mobile app, called PLM Connect,… Continue reading PatientsLikeMe usability study for mobile app