The Institute for Clinical and Economic Review (ICER) is developing an assessment of the clinical effectiveness and value of lumacaftor/ivacaftor (Orkambi®) and ivacaftor/tezacaftor (VX-661). The Foundation is sharing input throughout the process to help incorporate the patient and clinical perspective.
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The U.S. House of Representatives has passed the American Health Care Act (AHCA), legislation that fails to adequately protect people living with cystic fibrosis.
The Cystic Fibrosis Foundation presented four individuals with awards at the 2018 Volunteer Leadership Conference (VLC). The awards given were the Tomorrow's Leader Award, the Jena Award, the Alex Award, and the Dream Big Award.
The Patient Registry is an invaluable tool for researchers conducting observational studies about people with CF in the U.S. About 50,000 individuals have been followed in the Registry since its inception in 1986; many of them have been included for over 20 years.
The Success with Therapies Research Consortium helps the clinical study of interventions so people with cystic fibrosis can improve the consistency of their day-to-day management of their CF to optimize health outcomes and quality of life.
President Donald Trump signed an executive order on health care that could weaken patient protections. He also announced a plan to stop paying cost-sharing reduction (CSR) subsidies to health insurance companies. Both decisions could negatively affect people with cystic fibrosis.
CF MiniCon: Transplant is a virtual event for people with cystic fibrosis, their family members, and caregivers to learn about advanced lung disease and explore all stages of the transplant process.
CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
The Cystic Fibrosis Foundation took the Volunteer Leadership Conference (VLC) on the road this year and hosted the event in Dallas on April 7 and 8.