viernes, 12 de junio de 2020

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Cystic Fibrosis Weekly Update

Contents:

England Using Home Spirometry Kits to Cut Down on Hospital Visits

Jun 12, 2020 07:00 am | Forest Ray



home spirometry kitsThousands of people in England with cystic fibrosis (CF) soon will be equipped with digital home spirometry kits. This will allow patients age 6 and older to monitor and share vital lung function information with their physicians without leaving home unnecessarily to make often-lengthy journeys to the hospital. Monitoring changes in lung function alerts those […]
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Kalydeco Approved in Europe to Treat Children with R117H Mutation

Jun 11, 2020 07:00 am | Steve Bryson PhD



KalydecoThe European Commission has approved Vertex’s Kalydeco (ivacaftor) for the treatment of children and adolescents with cystic fibrosis (CF) who carry the R117H mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene, which is defective in CF. Kalydeco previously was approved in Europe for children (6 months and older) and adolescents with at least one […]
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Coalition Will Address Racial Disparities in Rare Disease Communities

Jun 10, 2020 11:25 am | Forest Ray



diversity coalitionThe Black Women’s Health Imperative (BWHI) recently created a Rare Disease Diversity Coalition focused on reducing racial disparities in the rare disease community. Getting a timely and accurate diagnosis for a disease that few people — sometimes even physicians — have heard of is challenging on its own merit. But people of racial and ethnic […]
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