fibrosis

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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“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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“I continue to be inspired by those who share this fight with me” – PatientsLikeMe member Doug shares his journey with HP

Meet Doug. He’s part of the pulmonary fibrosis (PF) community on PatientsLikeMe and is living with a condition specifically known as chronic hypersensitivity pneumonitis (HP). It’s similar to other types of PF, but also has its differences. We caught up with Doug for an interview to help spread the knowledge about these two conditions, but

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“We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF

Just yesterday, you saw our very own Sally Okun RN, Vice President of Advocacy, Policy and Patient Safety, reported back about her experiences at the FDA Patient-Focused Drug Development Public Meeting on IPF. And today, we wanted to share the patient experience. For each public meeting, the FDA invites patients and caregivers to apply to

“We are many” – PatientsLikeMe member Laura reports back on her experiences as a panelist at the FDA Patient-Focused Drug Development Public Meeting on IPF Read More »

Sally Okun reports back from the FDA Patient-Focused Drug Development Public Meeting on IPF

On September 26th I was at the FDA for the Patient-Focused Drug Development Public Meeting on IPF. This is one of 20 meetings that the FDA is holding to learn directly from patients and their caregivers about daily life with the specific condition’s symptoms and treatments. (You can learn more about these meetings here.) I have attended

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Shining the spotlight on pulmonary fibrosis

  You may have seen our post on Pulmonary Fibrosis Awareness Day, but did you know September is also Pulmonary Fibrosis Awareness Month? The Pulmonary Fibrosis Foundation (PFF) wants everyone to shine the spotlight on idiopathic pulmonary fibrosis (IPF), and many PatientsLikeMe members have already shared their stories – Lori documented her journey from diagnosis

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Let the world know about pulmonary fibrosis

On Rare Disease Day back in February 2013, we announced our partnership with Boehringer Ingelheim to help enhance the online idiopathic pulmonary fibrosis (IPF) community. And by September 7th that same year, the community had grown to just over 1,000 people. Today, on the next edition of Global Pulmonary Fibrosis Awareness Day, the community stands 2,500+

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The Patient Voice- PF member Bryan shares his story

  Since we announced #dataforgood back in March, many PatientsLikeMe members have been sharing about why they donate their own health experiences. Becca (fibromyalgia) and Ed (Parkinson’s) already shared their stories, and now we’re hearing from Bryan, an idiopathic pulmonary fibrosis (IPF) member. Check out his video above. Miss Becca or Ed’s? Watch them here.

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“Gee, doc, ya think?” – Barbara speaks about her diagnosis and life with IPF

PatientsLikeMe member Barbara (CatLady51) recently shared about her journey with idiopathic pulmonary fibrosis (IPF) in an interview with us, and she spoke about everything from the importance of taking ownership of managing her condition to how she hopes to “turn on the light bulb” by donating her personal health data. Read her full interview about

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