On Aug. 27, leaders from the Cystic Fibrosis Foundation, along with several people from the CF community, participated in a virtual public meeting hosted by the Institute for Clinical and Economic Review to provide insights and expertise on the value of CFTR modulators.
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Chronic infection with P. aeruginosa is associated with increased morbidity and mortality. Effective regimens include antibiotic therapy for newly acquired infection and routine surveillance with oropharyngeal cultures.
Working as part of a cystic fibrosis care team gives me the opportunity to provide the type of personal care I’m passionate about — I just hope my patients understand how much we are invested in their well-being.
A well-performed and well-interpreted sweat test is the gold standard for accurately diagnosing cystic fibrosis. These guidelines were developed by consensus based on expert opinion and a review of the medical literature.
The Mutation Analysis Program provides free genetic testing to people with cystic fibrosis to help identify their CF gene variants.
As people with cystic fibrosis live longer, there is a growing demand for physicians who are trained to address the unique medical needs of adults with CF and a need for greater participation from adult care programs in the clinical research enterprise.
CF care centers have worked hard to improve health outcomes. A new initiative seeks to improve the quality of our experiences at care centers.
As Evan's mom, I have to constantly decide where to invest my time, especially when it comes to providing feedback. So, when offered the chance to turn my survey fatigue into something that would actually make a difference and be less of a hassle to do, I jumped at it.
When I started coughing up blood, letting my care team know helped me handle it the next time.