lunes, 27 de mayo de 2019

Cystic Fibrosis News Today Weekly Digest


Cystic Fibrosis Weekly Update

Contents:

Agency Unveils RaDaR to Help Patient Groups Develop Rare Disease Registries

May 27, 2019 07:00 am | Larry Luxner



AnnePariser, RaDaRRaDaR, 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 […]
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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 […]
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