Cystic Fibrosis News Today Weekly Digest

Cystic Fibrosis Weekly Update Contents: Long-term Treatment with Kalydeco Decreases Risk of Lung Infection, Study Reports Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate Let’s Talk About Money: Dollars and Disabilities in the Workplace Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card Using Nebulizer While Lying on Alternating Sides Can Better Deposit Therapy Across Lungs, Trial Finds Long-term Treatment with Kalydeco Decreases Risk of Lung Infection, Study Reports Aug 02, 2019 07:00 am | Patricia Inacio, PhD Treatment for three years with Kalydeco (ivacaftor) reduces the risk of lung infection by serious pathogens — including Pseudomonas aeruginosa and Staphylococcus aureus — in people with cystic fibrosis (CF), a U.K. study reports. The study, “Ivacaftor Is Associated with Reduced Lung Infection by Key Cystic Fibrosis Pathogens: A Cohort Study Using National Registry Data,” was published […] The post Long-term Treatment with Kalydeco Decreases Risk of Lung Infection, Study Reportsappeared first on Cystic Fibrosis News Today. Read More Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senate Aug 01, 2019 06:10 pm | Grace Frank Screening newborns for genetic diseases with treatments that can prevent crippling or deadly progression, especially for rare disorders, has a ways to go in the United States. No state today tests for all 35 disorders recommended under a federal screening panel, and even in those that come close, rare diseases can fall to competing priorities. […] The post Rare Disease Groups Seek Public Support to Renew Newborn Screening Act in Senateappeared first on Cystic Fibrosis News Today. Read More Let’s Talk About Money: Dollars and Disabilities in the Workplace Aug 01, 2019 09:00 am | Elly Aylwin-Foster A common perception about those with disabilities is that when they find a job, they are so appreciative that they are the most dedicated, loyal employees in the building. A recurring theme in conversations that I’ve had about working with chronic illness is that those of us with a disability are often so thankful to […] The post Let’s Talk About Money: Dollars and Disabilities in the Workplace appeared first on Cystic Fibrosis News Today. Read More Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card Aug 01, 2019 07:15 am | Larry Luxner Oklahoma suffers more tornadoes than any other state, has the highest per-capita rate of women in U.S. prisons, ranks second in the number of teen births per 100,000 teenage girls, and has the nation’s third-highest rate of uninsured residents — with 13.9% of all Oklahomans lacking health coverage. As if that’s not enough, the Sooner […] The post Oklahoma Ranks Lowest on Programs Key to Rare Diseases on NORD’s 2019 State Report Card appeared first on Cystic Fibrosis News Today. Read More Using Nebulizer While Lying on Alternating Sides Can Better Deposit Therapy Across Lungs, Trial Finds Aug 01, 2019 07:00 am | Alice Melão People using a nebulizer while lying on their side showed no significant loss in a treatment’s overall deposition in the lungs, a study in healthy adults and in cystic fibrosis (CF) patients reports. Rather, it found that alternating sides instead of sitting upright may better deposit a medicine’s active compounds throughout the lungs, especially across […] The post Using Nebulizer While Lying on Alternating Sides Can Better Deposit Therapy Across Lungs, Trial Finds appeared first on Cystic Fibrosis News Today. Read More   Recent News Development Bank of Wales Raises Funds for UK’s Cystic Fibrosis Trust Do You Feel What I Feel? Proteostasis Begins Dosing in Phase 2 Trial of 3 CF Investigational Therapies I Am Not a Morning Person The Long-term Effect of Disability Language