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AdheranceAdvocacyfeatured_memberNews & EventsTechnology

Fertile Areas for Experimentation: a New App for Cystic Fibrosis!

One of our Cystic Fibrosis Digital Opinion Leaders speak about the need for an app that could help patients record information and reveal correlations. From one of our Digital Opinion Leaders! I would love an app that allows me to record information that I feel might be important so I …

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charlesdarwinImogene
Living With CFNews & EventsResearchSupportTechnology

The Data Will See You Now! and Cystic Fibrosis Data is Valuable!

I was invited to speak at the PanagoraPharma Conference on Mobile Technology on June 28, 2017. I arrived first thing on Tuesday morning, slide set in hand. The 40th floor of Trade Tower 7 New York City is just as amazing as it sounds…but as I walked in, I was …

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PGCFT
AdheranceLiving With CFResearchTechnology

Evolution of a New App for Cystic Fibrosis management

Behind The Scenes With A New App For Managing Your Cystic Fibrosis By Jeanne Barnett, founder of CysticFibrosis.com In my 21 years of operating CysticFibrosis.com and from reading over two million messages in our forums, I’ve learned that CF patients generate fascinating data that is valuable to other patients, caregivers, …

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Living With CFTechnologyTreatments

A Day with Portable Genomics for Cystic Fibrosis management

  Using the Portable Genomics App   CFtechnology and Portable Genomics are proud to create a partnership using a new, customizable app! In the Digital Age, it is no surprise that apps are finding their way into the medical field. Technology is everywhere, so why not harness the power of …

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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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artificial_pancreas2
Living With CFTechnologyTreatments

(Cystic Fibrosis Diabetes) First FDA approved artificial pancreas and other 2016 Digital health highlights

The “What We Learnt in Digital Health in 2016” article (by Bertalan Meskó, MD, PhD) takes a look at the successes, failures and challenges in the field of digital health in 2016 and provides an interesting view on some current trends. The first FDA-approved artificial pancreas is mentioned (which may be of interest …

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DiagnosisLiving With CFTechnology

Flourescent Sensor is a new Low-Cost Tool for Cystic Fibrosis diagnosis

Read the article here on sciencedaily.com “Scientists have developed a new diagnostic test for cystic fibrosis. The new device provides a cheaper, easier way to detect levels of chloride in sweat, which are elevated in cystic fibrosis patients.” “Cystic fibrosis is caused by two faulty copies of a gene that affects …

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bluetooth
AdheranceLiving With CFResearchTechnology

Bluetooth-enabled tech shows promise for adherence in Cystic Fibrosis treatment

A device that monitors inhaled antibiotic use in Cystic Fibrosis treatment, and transmits the information to doctors via Bluetooth technology resulted in improved adherence and lung function in a pilot study from Ventura County Medical Center in Ventura, California. Reported in a press release from the journal Chest this month: …

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Living With CFTechnologyTransplants

Lung Bio-engineering Clinical Trial may benefit cystic fibrosis patients

EX VIVO LUNG PERFUSION During an organ transplant, time is of the essence and Ex Vivo Lung Perfusion is no different. Lungs are explanted, evaluated, and shipped as quickly as possible to our specialized EVLP facility. The EVLP team works around the clock to assess the lungs, share data with …

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