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Cystic Fibrosis testing: Genetic and Rare Diseases Information Center

The National Institutes of Health (NIH) publishes up-to-date information about cystic fibrosis testing on its Genetic and Rare Disease Information Center webpage (GARD). This is their FAQ about testing and resources. It discusses what situations warrant genetic testing, what tests are available and how much they cost, and how to …


Cystic Fibrosis symptoms: Mayo clinic’s sinusitis treatment suggestions

For many patients, chronic sinusitis is a part of their many Cystic Fibrosis symptoms. From the Mayo Clinic, about sinusitis: The goal of treating chronic sinusitis is to: Reduce sinus inflammation Keep your nasal passages draining Eliminate the underlying cause Reduce the number of sinusitis flare-ups Treatments to relieve symptoms …


Better Lung Scanning Technology

New scanning technology which will give a much clearer picture of lung disease has taken a major step forward thanks to scientists at The University of Nottingham. The experts at the Sir Peter Mansfield Imaging Centre have developed a process using specially treated krypton gas as an inhalable contrast agent …


Survey of Cystic Fibrosis Patients by GeneFo

As reported on the website Cystic Fibrosis News Today,GeneFo, the online platform for organizing different chronic disease communities, surveyed 2,400 people with Cystic Fibrosis. The questions they asked included: How are you feeling today? Depressed (39%) and Tired (34%) were top answers. What is your preferred calorie booster? Meat (37%) …


Individual Counseling Offered

jricci brings us this great news: Through a very generous contribution Financial Support for Individual Counseling Services are being offered to the CF Community! Read More: CFQoL_Counseling_Flyer_2016

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The Importance of Treating Depression in People with Cystic Fibrosis

Depression can be a difficult subject to talk about, but it is important to be aware of the increased prevalence of depression in people with cystic fibrosis and other chronic health conditions, and to try to understand how depression, physical health, and general well-being are interrelated. In 2007, five doctors and …

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Xbox Kinect to Monitor Lung Function

Researchers in the UK are developing technology for enhanced spirometry with 3-D imaging using four Microsoft Xbox Kinect devices. This technology assesses lung function and chest wall movement, and might also be useful in testing medication efficacy and changes in respiration during exercise. From the article in Forbes magazine: In …


Social Security Disability Benefits for people with Cystic Fibrosis

Introducing Deanna Power, the Director of Community Outreach for Social Security Disability Help. She wrote this article for our community at to help shed light on the subject of applying for disability benefits.   Applying for Disability Benefits with Cystic Fibrosis     by Deanna Power   Cystic fibrosis …


In the News: Inhaled Levofloxacin & QIDP Designation

Raptor Pharmaceutical’s MP-376 (Inhaled Levofloxacin) granted QIDP Status by the FDA on March 16, 2016. What is Qualified Infectious Disease Product (QIDP) Designation? QIDP status gives a drug priority review by the FDA, eligibility for Fast Track designation, and an extension of marketing exclusivity. This incentivizes pharmaceutical companies to devote …

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Cystic Fibrosis: Three pilates exercises that may increase breathing strength

People with Cystic Fibrosis often suffer from air trapping and hyperinflation of their lungs. Air trapping is an abnormal retention of air. It can occur because the lungs lose elasticity and air doesn’t escape, and because mucus and inflammation obstruct exhalation. The trapped air can then cause the lungs to …