The Cystic Fibrosis Foundation made a strategic commitment to develop a multi-pronged approach to help people with cystic fibrosis stick with their treatment plans called Partnerships for Sustaining Daily Care (PSDC). Learn more about this initiative and how you can get involved.
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Because cystic fibrosis is a complex disease, it requires a team approach with you or your child at the center. Your CF care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
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.
Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
Each time we meet, I am reminded that quality improvement in CF care cannot happen without the insights of people with CF and their families.
It can be difficult to find time for daily CF treatments in your already jam-packed lives, but your respiratory therapist can help.
Sometimes, being the “squeaky wheel” is the only way to make a positive change.
All my life I wanted an answer to why I was so sick. Then I got it, in the form of a CF diagnosis.
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.