concert pills
Living With CFNews & EventsResearchTreatments

Treatment for Cystic Fibrosis: Vertex Acquires Concert’s CFTR Potentiator CTP-656

Vertex Pharmaceuticals recently purchased the Phase 2 cystic fibrosis potentiator drug CTP-656 from Concert Pharmaceuticals. The deal is estimated to be worth $250 million dollars. CTP-656 is intended to be a longer-acting, once daily version of Vertex’s drug ivacaftor, which aims to restore CFTR function in treatment for Cystic Fibrosis. …

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FinancialLiving With CFTreatments

Mom takes on Vertex CEO about pricey Cystic Fibrosis Treatment Drugs

In October, Oklahoma-based journalist and mom Juliana Keeping traveled to Boston with her son to confront Jeffrey Leiden, the CEO of Vertex Pharmaceuticals. Keeping’s son, Eli, has cystic fibrosis, and she’s not happy that Vertex’s two-drug combo, Orkambi, costs $259,000 a year. So Keeping, who gathered more than 124,700 signatures on …

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FinancialLiving With CFSupport

Individual Counseling Offered

jricci brings us this great news: Through a very generous contribution Financial Support for Individual Counseling Services are being offered to the CF Community! Read More: CFQoL_Counseling_Flyer_2016

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AdvocacyClinical Trials

We Lobby

A Brief History of Our Lobbying Efforts in 2015   In April, 2015, we sent this letter to the FDA Committee: Sent: Thursday, April 02, 2015 12:17 PM To: PADAC Subject: on line patient community at cysticfibrosis.com Dear Dr. Hong, We run an on line patient community at cysticfibrosis.com. Several …

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GeneticsLiving With CFResearchTreatments

Trial results of Ivacaftor in children ages 2-5

Results are out from a two part study involving children ages 2-5 with at least one gating mutation trying Ivacaftor. From the Lancet Respiratory Journal, 20 January 2016 Ivacaftor has been shown to be a safe, effective treatment for cystic fibrosis in patients aged 6 years or older with a …

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