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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Here's what you need to know about the four CFTR (cystic fibrosis transmembrane conductance regulator) modulators.
Researchers are exploring treatments that will keep people with cystic fibrosis as healthy as possible until a cure is found. In the first plenary at the NACFC, two CF scientists explain the progress of current research.
For those of us without a medication that targets our cystic fibrosis mutation, it's important to remember that our life with CF is a marathon.
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.
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.