An IPF Diagnosis Before 30: It Doesn’t Just Affect Older Adults
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An IPF Diagnosis Before 30: It Doesn’t Just Affect Older Adults

Idiopathic Pulmonary Fibrosis (IPF) most commonly affects aging adults, but for columnist Charlene Marshall, the disease struck in her late 20s. A diagnosis in and of itself is shocking, but…

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Editor’s Choice: When Being a Rare Disease Patient = Being a Fighter

WHEW! That week was short, wasn't it? We hope you had an awesome Independence Day Weekend in the US, and Canada Day in our neighbors to the north. This week,…

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IPF Patients, Caregivers! Use This Free Online Educational Program!
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IPF Patients, Caregivers! Use This Free Online Educational Program!

“Idiopathic Pulmonary Fibrosis: Partnering with Your Doctor,” is an interactive program for people diagnosed with idiopathic pulmonary fibrosis (IPF) and their caregivers. And you know what's even more awesome about…

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Empowering Patients and Accelerating Research: It’s Everyone’s Goal in the Rare Community
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Empowering Patients and Accelerating Research: It’s Everyone’s Goal in the Rare Community

The Pulmonary Fibrosis Warriors (PF Warriors) and monARC Bionetworks teamed up today to host a Facebook Live video, sharing important information about how patients can become more involved in research…

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This Just In: More Support For Exciting New IPF Treatment!
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This Just In: More Support For Exciting New IPF Treatment!

Support for Ofev® just keeps coming! Ofev® (nintedanib) was first approved by the U.S. FDA in 2014 for the treatment of idiopathic pulmonary fibrosis (IPF) after clinical trials, especially the INPULSIS…

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monARC Bionetworks’ Data Sharing Could Benefit the Rare Disease Community
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monARC Bionetworks’ Data Sharing Could Benefit the Rare Disease Community

Scientists aren’t always the best at sharing amongst themselves. But sharing data could mean accelerated research. By making your own data available to scientists you can help contribute to a…

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Thinking Positively While Dealing with Pulmonary Fibrosis (PF)
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Thinking Positively While Dealing with Pulmonary Fibrosis (PF)

Positive Thoughts Kim Frederickson was diagnosed with pulmonary fibrosis (PF) in 2014. She has used her skills as an author to share her story. Her motto is to focus on…

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Editor’s Choice: IDF Sessions on CGD, IPF Progress and FDA Approval

Happy Friday Patient Worthians! You might notice that the headline has a lot of acronyms in it... ah, welcome to the rare disease world! We DO have answers for what all of that…

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The BEST Method of Explaining IPF Oxygen Therapy to Patients is FREE
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The BEST Method of Explaining IPF Oxygen Therapy to Patients is FREE

When your lungs aren’t getting enough oxygen, it’s a real problem. A big problem, especially, when a person is living with idiopathic pulmonary fibrosis (IPF). But that’s not the only…

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SOS… Can Someone PLEASE Explain Effectiveness of Esbriet for IPF?
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SOS… Can Someone PLEASE Explain Effectiveness of Esbriet for IPF?

I read a rather confusing article about Esbriet, the first FDA-approved treatment for idiopathic pulmonary fibrosis (IPF), and I’d sincerely appreciate your help to make sense of it all. Let me…

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Scientists Insist Exercise May Change Course of IPF Progression
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Scientists Insist Exercise May Change Course of IPF Progression

If you or your loved one is living with idiopathic pulmonary fibrosis (IPF), scientists have proven that there is a link between exercise and longevity—especially for people who have IPF.…

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The Amazing Reason Why a Man Will Climb 45 Flights of Stairs After a Lung Transplant
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The Amazing Reason Why a Man Will Climb 45 Flights of Stairs After a Lung Transplant

Stephen Mitchell was losing his fight with IPF about five years ago. He began running because he did not want to die of a lung disease, like his father. Although…

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Why Everyone Needs to Understand These Important But Simple Facts About IPF
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Why Everyone Needs to Understand These Important But Simple Facts About IPF

After watching a rather “dry” physician, a pulmonologist (I presume) on a video (you can watch it here), I felt like there was more to be had. This goes beyond…

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Check Out This Interactive New Resource for IPF Patients
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Check Out This Interactive New Resource for IPF Patients

One of the hardest parts of being diagnosed with a strange condition you’ve never heard of—like Idiopathic Pulmonary Fibrosis (IPF)—is just getting your arms around what the hell it is…

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Got Five Minutes? Check Out This Interactive Program on IPF
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Got Five Minutes? Check Out This Interactive Program on IPF

Treading water is difficult. Sometimes, that’s how it feels navigating a new diagnosis. It’s like trying to keep your head above water in a vast, foreign ocean, as waves of information…

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