Cystic Fibrosis News Today Daily Digest

Cystic Fibrosis Weekly Update Contents: COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say Let’s Unite to Ditch the Charade of ‘I’m Fine’ Mobile PERT App Helps Improve Quality of Life for Children With CF, Study Shows Real-world Use of Kalydeco for CF Highly Effective, Large-scale Analysis Shows COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say May 29, 2020 09:30 am | Larry Luxner While the ongoing COVID-19 pandemic won’t have much of an impact on cash available for new biotech startups, it has begun to cause delays in the development of gene therapies to treat a variety of rare diseases. That’s the consensus of industry experts who spoke in a May 26 webinar hosted by the events organizer […] The post COVID-19 Delaying Rare Disease and Gene Therapy Trials, Pharma Execs Say appeared first on Cystic Fibrosis News Today. Read More Let’s Unite to Ditch the Charade of ‘I’m Fine’ May 29, 2020 09:00 am | Lara Govendo Confusion over how we “should” react to suffering wreaks havoc in the mind, often triggering a shame response. We so often utter the words, “I’m fine,” though that performative response is far from the truth. Inside, we cry out for help. The cultural norm’s expectation is to function without our inner pain affecting us. Changing […] The post Let’s Unite to Ditch the Charade of ‘I’m Fine’ appeared first on Cystic Fibrosis News Today. Read More Mobile PERT App Helps Improve Quality of Life for Children With CF, Study Shows May 29, 2020 07:00 am | Joana Carvalho, PhD MyCyFAPP, a mobile app designed to help patients with cystic fibrosis (CF) manage their pancreatic enzyme replacement therapy (PERT) regimen, can improve the quality of life of children with the disease, particularly those with severe gastrointestinal (GI) symptoms, study says. The study, “Use of a mobile application for self-management of pancreatic enzyme replacement therapy is […] The post Mobile PERT App Helps Improve Quality of Life for Children With CF, Study Shows appeared first on Cystic Fibrosis News Today. Read More Real-world Use of Kalydeco for CF Highly Effective, Large-scale Analysis Shows May 28, 2020 07:00 am | Steve Bryson PhD Kalydeco treatment led to fewer deaths, transplants, hospitalizations, and exacerbations in people with cystic fibrosis (CF) compared to patients who did not receive the therapy, according to a five-year, real-world analysis of patient registries in the U.S. and U.K.  The results of the analysis were published in the journal Pulmonary Therapy, under the title, “Real-World […] The post Real-world Use of Kalydeco for CF Highly Effective, Large-scale Analysis Shows appeared first on Cystic Fibrosis News Today. Read More   Recent News Microbe DNA Discovery May Lead to Noninvasive Test for CF Infections I’m a Dancer but I Can’t Walk Right Now How Dying Taught Me to Live OneLegacy Video Series Promotes Organ, Tissue Donation Eurordis Urges Expansion of Newborn Screening Initiatives Across Europe