Cystic Fibrosis News Today Weekly Digest

Cystic Fibrosis Weekly Update Contents: Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries 31 Days of CF: William’s Story Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries May 27, 2019 07:00 am | Larry Luxner RaDaR, the catchy new name for the U.S. government-run Rare Diseases Registry Program, aims to help patient advocacy groups with limited resources build their own disease registries. The site was developed by the National Center for Advancing Translational Sciences (NCATS), a division of the National Institutes of Health(NIH). Anne Pariser, MD, director of the Office […] The post Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registriesappeared first on Cystic Fibrosis News Today. Read More 31 Days of CF: William’s Story May 24, 2019 11:15 am | Luisa Palazola   View this post on Instagram   Day 4 of 31 Days of CF ⁣⁣⁣ Topic: Comedy and CF ⁣⁣⁣ ⁣⁣⁣ —⁣⁣⁣ ⁣⁣ ⁣It was a brisk Saturday night in New York City. I’m in the small basement of the basement of the Klimat Lounge, home of the Laughing Buddha Comedy Open Mic. It’s 2016 […] The post 31 Days of CF: William’s Story appeared first on Cystic Fibrosis News Today. Read More   Recent News Kalydeco’s Safety and Benefits Maintained Long-term in 2-to-5-year-olds with CF, Phase 3 Trial Shows 31 Days of CF: William’s Story The Work of ‘Project Fix Me’ Is Never Done Mutation in CFTR Gene Affects the Body’s Inner Clock, Mouse Study Suggests 31 Days of CF: Leila’s story