IPF

“You may not like it, but make the MOST of it.” – An interview with IPF member Nikki

When Nikki (Nimiha) was diagnosed with IPF in 2010, she was already a survivor of both ovarian cancer and a heart attack. Staying positive and up-to-date on new information is now this retired RN’s best defense – and she’s been sharing it with her IPF family on PatientsLikeMe since March. We had the chance to […]

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Your data doing good: IPF treatment experiences

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

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Still leading a full life – An interview with IPF member David

David’s (darbygreenboy) username comes from the village in the English countryside where he lives and is still an active member of the community. We caught up with this grandfather of 10 – a former business owner, mayor and leader of the town council to talk about living with IPF. Here’s what we learned … Tell

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PatientsLikeMe Names 2015-2016 Team of Advisors, Sets Focus on Redefining Patient Partnerships

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

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Hartfell shares about her PatientsLikeMeInMotion™ experience

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

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Food for Thought: July (chocolate) edition, take 2

Last year, July’s Food for Thought revolved around MS members sharing their experiences with chocolate. This year, we thought we’d continue the tradition – check out what a few members had to say about their relationships with the delicious sweet: “I have been trying a dairy free diet for a couple of months due to

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“Don’t go it alone” – IPF member Christine shares about her health journey

Christine_Williams was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2009, and ever since, she’s been managing a “rollercoaster ride that’s terrifying and not fun.” But she’s connected with your community on PatientsLikeMe for inspiration and was even referred to a new medical center to be evaluated for a lung transplant by her “rehabilitation buddies.” Below,

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PatientsLikeMe members to be highlighted in patient empowerment webinar

Many PatientsLikeMe members talk openly about the reasons why they donate their health data and why they believe patient-centered healthcare means better healthcare for all. And just a week from now, two of them will be sharing their stories with everyone in a live webinar. On Tuesday, January 20th, at 2:00pm EST, the Partnership to

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2014 recap – a year of sharing in the PatientsLikeMe community

Another year has come and gone here at PatientsLikeMe, and as we started to look back at who’s shared their experiences, we were quite simply amazed. More than 30 members living with 9 different conditions opened up for a blog interview in 2014. But that’s just the start. Others have shared about their health journeys

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