Learning that your child has cystic fibrosis can be overwhelming. You may feel sad, guilty, scared, or even angry, but you are not alone. We are here to help.
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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.
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.
If you're the parent of a child with cystic fibrosis, you probably know the worry that comes along with sending your kid away to summer camp. To ensure that my own kids with CF were cared for at camp, I wrote the following letter outlining their special medical needs.
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.
As a hospital administrator, I try to apply what I've learned from receiving care as a person with CF to provide better health care for my patients.
When my wife and I found out that our daughter had cystic fibrosis, we decided to start maintaining a daily schedule for her CF treatment and care. Here are five ways that we uphold this routine and encourage our little girl to take an active role in her own care.