Teams of dedicated health care professionals in a nationwide network of more than 130 Cystic Fibrosis Foundation-accredited care centers partner with people with CF and their families to provide expert care and specialized disease management.
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As a high school nurse responsible for 1,200 students — three of whom have cystic fibrosis — I'm finding this upcoming school year to be particularly challenging. Here is how I implemented a plan of action to keep each student safe while balancing their specific needs.
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.
Learning to help my wife access her port is part of our shared journey with CF. Check out our video for some tips and tricks we’ve learned along the way.
In the third plenary, Dr. Wayne Morgan talked about the connection between cystic fibrosis care and the Patient Registry, and introduced a new way for people with CF, along with their families, to help shape the research conducted using the Registry.
A day spent visiting a care center proved the perfect introduction to the CF story for legislative staffers.
Want to know why getting a flu shot is so important? I ignored my early flu symptoms, which ended up spoiling the holidays and leading to an exacerbation.
Nationwide Effort to Instill Best Practices for Cystic Fibrosis Care is Honored for Excellence
New Patient Data Posted Online Shows Improvements Across Care Center Network