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.
It is important to discuss a possible lung transplant long before you need to be listed. This will give you time to prepare for transplant as a future option and work with your cystic fibrosis care team to understand the implications and to create a plan.
Surgery and recovery involves more than replacing your lungs. The process also includes making the physical and emotional adjustment to life with your new lungs.
Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
When my mom used to ask me what I wanted to be when I grew up, I told her that I wanted to be a dad. The journey to fatherhood with cystic fibrosis is full of obstacles, but I would give anything to pass on the traits I've gained from living with this disease to a child of my own.
If your cystic fibrosis care team refers you to a lung transplant center, you and your transplant team will have the opportunity to get to know each other.
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.
Although my lung transplant was the end of one story, it was also the beginning of another, more difficult story.