jueves, 27 de febrero de 2020

Cystic Fibrosis News Today Daily Digest

 

Cystic Fibrosis Weekly Update

Contents:

Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar

Feb 26, 2020 10:01 am | Hawken Miller



Starting a 501(c)(3) tax-exempt nonprofit isn’t easy, but the National Organization for Rare Disorders gave a few tips for those  looking to begin the complex process in its Feb. 20 webinar.  William Whitman, a senior project manager in NORD’s membership department, Jason Qu, a managing attorney at the D.C. Bar Pro Bono Center, and Seth […]
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UK NICE to Announce Decision on Vertex’s Therapy Trikafta in December

Feb 26, 2020 07:00 am | Iqra Mumal MSc



Vertex HQThe National Institute for Health and Care Excellence (NICE) in the U.K. is currently in the process of evaluating Vertex Pharmaceuticals’ triple combination therapy — known as Trikafta in the United States — for the treatment of cystic fibrosis (CF). The institute expects to deliver its recommendation on Dec. 16, 2020. NICE has the responsibility […]
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Being Sick Doesn’t Give Me a Free Pass to Be Disrespectful

Feb 25, 2020 03:00 pm | Bailey Vincent



being sickI’m going to say something that not everyone wants to hear: Just because we are sick doesn’t mean we get to be bad people. Let me explain. I have an inclusive dance company called Comebacks that I co-direct with an occupational therapist. Within this company, we have a variety of dancers dealing with a variety […]
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Israeli CF Group Lobbies for Trikafta’s Inclusion in National Health Basket

Feb 25, 2020 07:00 am | Larry Luxner



Trikafta coverage, IsraelTwo years ago, Israel became only the fourth country in the world — after the U.S., Germany, and Belgium — to agree to underwrite the cost of Vertex Pharmaceuticals’ three available therapies for cystic fibrosis: Kalydeco (ivacaftor), Orkambi (ivacaftor/lumacaftor), and Symdeko (tezacaftor/ivacaftor combo). But that’s not enough for the Cystic Fibrosis Foundation of Israel (CFFI). […]
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Patients, Supporters Worldwide Recognizing Rare Disease Day 2020
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