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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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.
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.
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
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.