viernes, 29 de mayo de 2020

Cystic Fibrosis News Today Daily Digest

 

Cystic Fibrosis Weekly Update

Contents:

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 […]
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Let’s Unite to Ditch the Charade of ‘I’m Fine’

May 29, 2020 09:00 am | Lara Govendo



mental health awarenessConfusion 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 […]
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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 […]
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Real-world Use of Kalydeco for CF Highly Effective, Large-scale Analysis Shows

May 28, 2020 07:00 am | Steve Bryson PhD



cf and KalydecoKalydeco 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 […]
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