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Trial results of Ivacaftor in Cystic Fibrosis children ages 2-5

Results are out from a two part study involving children ages 2-5 with at least one gating mutation trying Ivacaftor (a medication used in Cystic Fibrosis treatment) From the Lancet Respiratory Journal, 20 January 2016 Ivacaftor has been shown to be a safe, effective treatment for cystic fibrosis in patients …

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Genome editing with CRISPR-Cas9

This video explains how research in genome editing may help treat genetic diseases like CF in the future.

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Newly Diagnosed: What is Cystic Fibrosis

What is Cystic Fibrosis and how are genetics involved? This article shares some helpful information if you are newly diagnosed. Written by Aboveallislove Introduction Welcome to CysticFibrosis.com. If you are new to Cystic Fibrosis because you recently learned your unborn or newborn baby has, or may have, Cystic Fibrosis, please …

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Cystic Fibrosis testing: Genetic testing and sweat test

Written by LightNLife and Ambry Genetics updated by Melissa75   How many different CF mutations are there? More than 2000 and new ones being added all the time. http://www.genet.sickkids.on.ca/cftr/StatisticsPage.html What is meant by a “panel” test? A panel tests for a predefined number of mutations. It’s possible that a panel …

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A Conversation on Filing Taxes with Cystic Fibrosis

CF Tax Deductions Often people with Cystic Fibrosis and families with children with Cystic Fibrosis are not aware of the tax deductions they may be able to make to help offset the costs of the condition. Watch the videos and learn more….

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Cystic Fibrosis Resource and Information Needs Survey

Written by Melissa75 and Imogene In the Spring of 2015, we surveyed the CF community on resource and information needs. 478 people responded, answering questions about the resources for CF care they most believe could improve their CF care, and what topics they’re most interested in learning about. We’d like …

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Parenting Tips

Lisa Greene is a writer, educator and mother of two children with CF. She and child psychiatrist Dr. Foster Cline wrote a book about parenting children with health issues. The book can be found here, and this is her website www.TipsForCFParents.com Below is an article about five crucial concepts that …

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Cystic Fibrosis symptoms: Asthma, Allergies & Green FAQ

Written by member Nightwriter Please note that this information was compiled from numerous threads on the message boards relating to cystic fibrosis symptoms such as Asthma and Allergies. We encourage you to search and read the threads for more detailed information, engage in your own research outside the message boards …

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Ten Hurdles to Cystic Fibrosis Patient Adherence

By Jeanne Barnett on Jun 4, 2012 (source: EyeforPharma Blog) There are many factors which can influence the level of patient adherence in any given treatment, Jeanne Barnett looks at how social platforms can provide the answers and presents her findings. You may already be aware of the great success …

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Personal Spirometry and the Cystic Fibrosis Patient

Written by Jeanne Barnett As a moderator/founder of a vibrant online social health community: cysticfibrosis.com, I can attest to hundreds of messages in which cystic fibrosis e-patients discuss their PFTs (pulmonary function tests). Members are so in tune with these numbers, they often add them to their signatures along with …

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