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 UK NICE to Announce Decision on Vertex’s Therapy Trikafta in December Being Sick Doesn’t Give Me a Free Pass to Be Disrespectful Israeli CF Group Lobbies for Trikafta’s Inclusion in National Health Basket 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 […] The post Advice on Starting Nonprofit Groups for Rare and Other Diseases Focus of NORD Webinar appeared first on Cystic Fibrosis News Today. Read More UK NICE to Announce Decision on Vertex’s Therapy Trikafta in December Feb 26, 2020 07:00 am | Iqra Mumal MSc The 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 […] The post UK NICE to Announce Decision on Vertex’s Therapy Trikafta in December appeared first on Cystic Fibrosis News Today. Read More Being Sick Doesn’t Give Me a Free Pass to Be Disrespectful Feb 25, 2020 03:00 pm | Bailey Vincent I’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 […] The post Being Sick Doesn’t Give Me a Free Pass to Be Disrespectful appeared first on Cystic Fibrosis News Today. Read More Israeli CF Group Lobbies for Trikafta’s Inclusion in National Health Basket Feb 25, 2020 07:00 am | Larry Luxner Two 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). […] The post Israeli CF Group Lobbies for Trikafta’s Inclusion in National Health Basket appeared first on Cystic Fibrosis News Today. Read More   Recent News This Is What Makes Me Rare CF Yogi Offers Free Live-streamed Weekly Classes to Bolster Lung Health and Healing Energy Arrevus’s Oral Antibiotic ARV-1801 Receives FDA Orphan Drug Designation as CF Treatment Patients, Supporters Worldwide Recognizing Rare Disease Day 2020 Majority of Home Nebulizers Used by CF Children Contaminated with Microorganisms, Leading to Exacerbated Symptoms, Study Finds