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Cystic Fibrosis Weekly Update Contents: Study: Screening for Hearing Loss in CF Patients Feasible With Tablet-based Tests Restoring Humanity to the Statistics of Illness The Necessities of a Funeral Potential Gene Therapy, SPIRO-2101, Named Rare Pediatric and Orphan Disease by FDA Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US Study: Screening for Hearing Loss in CF Patients Feasible With Tablet-based Tests Sep 30, 2020 07:00 am | Forest Ray Tablet-based hearing tests can accurately screen for hearing loss in people with chronic lung diseases such as cystic fibrosis (CF) without specialist supervision, according to a recent study. This finding suggests that tablets may be an inexpensive and practical addition to programs that monitor patients for signs of hearing loss. The study, “Tablet and web-based […] The post Study: Screening for Hearing Loss in CF Patients Feasible With Tablet-based Tests appeared first on Cystic Fibrosis News Today. Read More Restoring Humanity to the Statistics of Illness Sep 29, 2020 03:00 pm | Bailey Vincent I am having trouble sleeping. Everywhere we look, it feels like the world is on fire (both figuratively and literally). And if it’s not in flames due to human negligence or greed, it’s certainly engulfed in political firefights. And the worst kind of political opinion is political opinion that isn’t political at all. “Try not […] The post Restoring Humanity to the Statistics of Illness appeared first on Cystic Fibrosis News Today. Read More The Necessities of a Funeral Sep 29, 2020 09:00 am | Brad Dell I had imagined that everything would move at light speed once I got the call for my lung transplant. Instead, it was a peaceful wait of about 23 hours in the hospital. I pondered what I wanted my “last” meal to be (strawberry yogurt, nachos, rice), tried to be present with my parents, scrolled through […] The post The Necessities of a Funeral appeared first on Cystic Fibrosis News Today. Read More Potential Gene Therapy, SPIRO-2101, Named Rare Pediatric and Orphan Disease by FDA Sep 29, 2020 07:00 am | Forest Ray Spirovant Sciences‘ lead gene therapy candidate for select cystic fibrosis (CF) patients, SPIRO-2101, was given rare pediatric disease and orphan drug designations by the U.S. Food and Drug Administration (FDA) to support its development, according to a recent press release. Orphan drug designation applies to medicines targeting disorders that affect fewer than 200,000 people in the U.S. […] The post Potential Gene Therapy, SPIRO-2101, Named Rare Pediatric and Orphan Disease by FDA appeared first on Cystic Fibrosis News Today. Read More Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US Sep 28, 2020 12:00 pm | Hawken Miller It took one year for Dona Krystosek to get a diagnosis for her son, Levi, after he was born. The family received three misdiagnoses of fatal diseases until they found out Levi has Jansen’s metaphyseal chondrodysplasia — an extremely rare form of dwarfism.   “The hardest thing for me to handle [about] … not getting an […] The post Efforts Continue Beyond Awareness Month to Expand Newborn Screening Panels in US appeared first on Cystic Fibrosis News Today. Read More Recent News Time Contracts Near Tragedy FDA Approves CF Treatment Kalydeco for Infants as Young as 4 Months What to Do When Depression Strikes Emily’s Entourage Awards $790K to Support Work on CF Therapeutics GI Problems Common and ‘Intrude’ on Daily Life, CF Survey Finds