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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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Living With CFNews & Events

ORKAMBI® (Lumacaftor/Ivacaftor) latest news: Germany, Australia availability

ORKAMBI® reimbursement agreement reached for Germany – December 19, 2016 Vertex Announces German Reimbursement Agreement for ORKAMBI® (Lumacaftor/Ivacaftor), the First Medicine to Treat the Underlying Cause of Cystic Fibrosis in People Ages 12 and Older with Two Copies of the F508del Mutation –(BUSINESS WIRE)–Vertex Pharmaceuticals Incorporated (Nasdaq:VRTX) today announced it has …

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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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GeneticsLiving With CFNews & EventsVideo

Rare Disease Patient Advocacy Summit

Later this week, Jeanne Barnett will be attending the fifth annual RARE Patient Advocacy Summit run by Global Genes in Huntington Beach, California. The goal of this year’s RARE Patient Advocacy Summit is for patients, caregivers, and advocates to walk away equipped with actionable next steps whether you have been …

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Living With CFNews & EventsResearchRespiratory Disease

Barnyard Dust and Preventing Asthma in Children (one of many Cystic Fibrosis symptoms)

People with cystic fibrosis have infection and inflammation in their lungs, and some also have problems with asthma, making asthma one of the many cystic fibrosis symptoms that patients experience. From the CDC: the prevalence of asthma in the general population of the U.S. is 7-9%, and as many as …

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GeneticsLiving With CFNews & EventsResearch

SuperHero DNA

Study finds individuals immune to severe diseases. A new study has found that certain people’s genes have evolved in such a way that they are immune to certain severe inherited conditions. The study involved the analysis of previously collected DNA sets totaling 589,306 genomes from around the world with researchers hoping …

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Living With CFNews & EventsResearch

Surprising Benefits from CF Research

CF Research May Help Agriculture Cystic Fibrosis is often referred to as an orphan disease i.e. research benefits a relatively small portion of the general population. But here is a serendipitous situation in which CF research may help agriculture on a large scale. A graduate student at the University of …

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Living With CFNews & EventsTechnologyTransplants

UCSD’s 3D Printed Liver Cells Most Liver-like Yet

3 D Printed Liver Image from ccsmobile.co.uk Feb 9, 2016 Home to the original bioprinting firm, Organovo, San Diego is, apparently, a hotbed of bioprinting activity.  Or, at the very least, the University of California, San Diego is make its own strides in the field of bioprinted liver tissue.  Published …

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ExerciseLiving With CFNews & Events

CF Patient To Climb the UK’s Three Highest Mountains in 24 Hours

Written by Leonor Mateus Ferreira Source: Cystic Fibrosis News Today Not long after his birth in 2013, Paul Siebenthal‘s son Noah was diagnosed with cystic fibrosis (CF) and the new father became aware that his son would struggle with a chronic, life-threatening disease for his entire life. However, Paul Siebenthal did not accept that …

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Living With CFNews & EventsTreatments

New cystic fibrosis drug has high potential, high cost

Written by Tracey Walker Source: Managed Healthcare Executive FDA’s approval of Vertex Pharmaceutical’s groundbreaking lumacaftor/ivacaftor (Orkambi) for cystic fibrosis (CF) is the first drug to treat the underlying cause of CF in people ages 12 and older with two copies of the F508del mutation. CF is an inherited chronic disease that affects …

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