There is a multitude of organizations working to support the cystic fibrosis community, as well as a variety of tools and information available to help people with CF not just live, but thrive.
CF Care Centers
In the mid-1950s, most children did not live to attend elementary school. Today, the predicted median age of survival is in the late-30s, thanks—in large part—to the care provided though the national network of CF care centers accredited by the Cystic Fibrosis Foundation.
The network provides expert cystic fibrosis care for people living with the disease. In fact, the National Institutes of Health has cited the CF care center network as a model of effective and efficient health care delivery for a chronic disease.
The CF Foundation funds and accredits about 115 cystic fibrosis care centers nationwide. Most care centers have a pediatric and adult program or clinic. Some centers also include affiliate programs. All programs, however, are staffed by dedicated healthcare professionals who specialize in the treatment of cystic fibrosis.
Each center undergoes thorough review by the CF Foundation’s Center Committee before it receives accreditation and funding. This review for accreditation occurs every year.
Besides taking care of people with cystic fibrosis, care centers also participate in CF clinical research and work to educate healthcare professionals about CF and the care people living with the disease require. Data from people with CF is collected in the national CF Foundation Patient Registry, which is a rich resource for CF health care providers and CF researchers to track the health of people living with CF in the United States.
Source: Cystic Fibrosis Foundation (updated August 2010)
For additional information on CF care centers, check out the resources below. Additional resources may be found on our
