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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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.
When I started coughing up blood, letting my care team know helped me handle it the next time.
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.
Community feedback highlights the importance of CF care teams, in-person CF care, and telehealth.