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. […]
Meeting PF patients where they are Read More »
Meet LaurCT, an active 2015-2016 Team of Advisors alum living with idiopathic pulmonary fibrosis (IPF). She underwent a left lung transplant at Brigham and Women’s Hospital in Boston in January and recently shared her experience with us. How are you feeling these days? I am feeling great. I’ve had a couple bumps in the road
Meet Glenda (gagafor2), a member of the 2016-2017 Team of Advisors. Glenda is a wife, mother and grandmother who finds great joy in making others happy. She’s also living with idiopathic pulmonary fibrosis (IPF). Recently, Glenda told us about coming to terms with the “unknown” in her future and coping with anxiety: “PatientsLikeMe became
Meet Glenda from the PatientsLikeMe Team of Advisors Read More »
CAMBRIDGE, Mass, November 14, 2016—PatientsLikeMe has named 11 members to its patients-only 2016–2017 Team of Advisors, which this year will focus on elevating the patient voice. Team members will share their stories, participate in community initiatives, and give real world perspectives to our industry and research partners. “Each year, our Team of Advisors has proven
PatientsLikeMe Welcomes Next Patient Team of Advisors Read More »
Over the past few months, the Team of Advisors has been sharing how they use the Partnership Principles in their personal health journeys. Laura, who’s living with IPF, recently sat down with us to talk about the New Britain PF Support Group she launched in Connecticut, and how important it is to have a community
Patients as Partners: Member Laura on launching a PF support group Read More »
We’d like to introduce you to Laura, another member of your 2015-2016 Team of Advisors. When Laura was diagnosed in 2013, she’d never heard of Idiopathic Pulmonary Fibrosis (IPF). Flash forward three years, and she’s made patient education and advocacy her main focus. Laura has spoken before the FDA, regularly blogs about IPF on various
Meet Laura from the PatientsLikeMe Team of Advisors Read More »
Every minute of every day, people are sharing their health data on PatientsLikeMe. Some of you are focused on tracking how you’re doing over time. Many want to make sure the next person diagnosed can learn from your experience. All are contributing to the greater good, because what you share helps researchers see what patients
Your data doing good: IPF treatment experiences Read More »
Cambridge, MA, October 19, 2015—PatientsLikeMe has named 14 members to its patient-only 2015–2016 Team of Advisors and challenged them to work through an issue that’s central to everyone in the healthcare system: how to redefine patient partnerships. The team will be focused on rethinking what it means for patients to be partners, and on establishing
PatientsLikeMe members hail from around the globe, and recently, 63 people gathered on the coast of Scotland for a walk to raise awareness of IPF and help people with IPF through Chest Heart & Stroke Scotland. The coolest part? The event was organized entirely online by PatientsLikeMe member Hartfell, and through the PatientsLikeMeInMotion™ program, everyone
Hartfell shares about her PatientsLikeMeInMotion™ experience Read More »
It’s time for another Throwback Thursday, and today, we’re rewinding back to the summer of 2013, when the staff at PatientsLikeMe shared about how they sleep. Sixty one employees helped kick off the “Are you sleeping?” campaign in a quick poll, answering questions about how long and how well they sleep each night. Check out
Throwback Thursday: Are you sleeping? Read More »
