heart fibrosis
Living With CFResearchTreatments

Pulmozyme May Extend Lives of People Without Cystic Fibrosis

Pulmozyme might be able to extend the lives of people who don’t have CF according to a recent article in Science Daily, “Fighting age-related fibrosis to keep organs young.” Since it was approved by the FDA in 1993, Pulmozyme (dornase alpha or DNase) has been used by many people with …

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cftr2
DiagnosisGeneticsLiving With CFResources

New Guidelines for Cystic Fibrosis Diagnosis

New Guidelines for Cystic Fibrosis Diagnosis A group of 32 scientists from nine countries have updated the guidelines for Cystic Fibrosis diagnosis. They published an article last month in The Journal of Pediatrics and the synopsis can be found here in Science Daily. The scientists looked at data from people …

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DNA CRISPR
GeneticsLiving With CFResearchTechnology

Radio Interview: CRISPR Gene Editing (relevant to Cystic Fibrosis genetics)

“There has never been a more powerful biological tool or one with more potential to both improve the world and endanger it.” For an in-depth look at the progress being made and the potential of CRISPR, the gene editing tool, listen to this radio interview on National Public Radio. Cystic …

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PGCFT
Living With CFNews & EventsResearchTechnology

Portable Genomics and CFTechnology.org Partnership for Cystic Fibrosis

From PRNewswire Portable Genomics and CFTechnology.org have entered into a partnership to enable cystic fibrosis patients to better collect, manage and share important biometrics with caregivers, researchers and the pharmaceutical industry News provided by Portable Genomics Jan 17, 2017, 06:04 ET SAN DIEGO, Jan. 17, 2017 /PRNewswire/ — Portable Genomics …

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burkholderia
Living With CFResearchRespiratory Disease

Cystic Fibrosis Lung Microbiome: Diversity and Lung Function

The article, The Lung Microbiome and Airway Disease, published September 2016 in the Annals of the American Thoracic Society, describes various research studies that analyzed the relationship between the lung microbiome and airway disease in Cystic Fibrosis. Scientists can now better examine microbial communities in the lungs, and they are …

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cigarette-666939_640
Living With CFResearchRespiratory DiseaseTreatments

CFTR Function and Cigarette Smoke

Scientists are looking at how the CFTR (Cystic Fibrosis Transmembrane Conductance Regulator) potentiator, Ivacaftor, might be used in COPD, specifically chronic bronchitis. They found that cigarette smoking reduces CFTR activity in lung tissue, and that exposing the lung cells directly to a CFTR potentiator reverses this effect. While the vast …

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orkambi
Clinical TrialsLiving With CFTreatments

Lumacaftor/Ivacaftor longer trial on Heterozygous F508del Cystic Fibrosis Patients

At the end of November, the results of a clinical trial of Lumacaftor/Ivacaftor, also known as Orkambi, in CF patients with one F508Del mutation were published in the Annals of the American Thoracic Society. A past trial for Orkambi in this type of CF patient (heterozygous F508del) lasted 28 days …

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photo of Staph bacteria from NIH (public domain)
Living With CFResearchRespiratory Disease

The Lung Microbiome and Dysbiosis

The “microbiome” is a hot topic in respiratory medicine, with researchers from diverse fields such as chronic obstructive pulmonary disease, bronchiectasis, pulmonary fibrosis, and lung transplantation seeking to use the newly accessible technology of bacterial ribosomal RNA sequencing and related technologies to characterize airway bacterial communities and to determine the …

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rx-redesign
AdheranceLiving With CFTreatments

Redesigning Prescription Medication Inserts

Six everyday items were re-imagined by designers in this week’s New York Times Magazine. A data visualization firm, Periscopic, and Thomas Goetz of Iodine, a health information website, created a more informative and easier to understand prescription medication insert that can be viewed here (scroll down the page to find …

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conference-303369_640
Living With CFNews & EventsResearch

North American Cystic Fibrosis Conference 2016

The 30th annual North American Cystic Fibrosis Conference took place in October 2016 in Orlando, FL and offered more more than 60 sessions on topics related to CF. It was attended by physicians, research scientists, nurses, respiratory and physical therapists, social workers and pharmacists and more. The summary from the session …

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