New Research Suggests Stem Cell Therapy Could Cure Lung Fibrosis Diseases
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New Research Suggests Stem Cell Therapy Could Cure Lung Fibrosis Diseases

A North Carolina-based research group has just developed research that indicates a potential stem cell treatment for lung fibrosis conditions such as cystic fibrosis (CF) and idiopathic pulmonary fibrosis (IPF).…

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Editor’s Choice: Survivor Status and Orphan Status are Both Good Signs in the Rare Disease World

Happy Friday! This week, we have a story that might break your heart about a woman who battled cystic fibrosis. But we also have a story that might inspire you about a…

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Editor’s Choice: Exciting New Tools and Devices to Help Rare Disease

Welcome Back to Editor's Choice! The end of the week is finally here, and we have some reading material for you. First, we have an awesome story of a CF…

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Editor’s Choice: It’s Junvenile Arthritis Awareness Month!

Happy Friday! How's the the sweltering heat treating you all (if you're on the east coast of the US, that is)? Hoping you are keeping cool! In the meantime, check out…

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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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