Adult Cystic Fibrosis Program

The Adult Cystic Fibrosis Program at Nebraska Medicine oversees the care of more than 200 patients from age 19 through adulthood. The multidisciplinary team includes physicians, nurse practitioners, nurses, respiratory therapists, dietitians, social worker, psychologist, research coordinator, physical therapist, pharmacist, and medication access coordinator. In addition, the Adult Cystic Fibrosis Program has an active patient advisory council, which is an extension of the team to provide patient perspectives. 

The program has been accredited by the Cystic Fibrosis Foundation since it began in August 2000.

View resources from Nebraska Medicine about lung care and cystic fibrosis

The Cystic Fibrosis Foundation is a leader in efforts to advance and promote care that improves lives of people with CF. The foundation created guidelines bringing together committees of experts including doctors, nurses, respiratory therapists, dieticians and CF families. These guidelines discuss diagnosis, nutrition, gastrointestinal issues, respiratory care, infection control and age-specific care.

 View Clinical Care Guidelines from the Cystic Fibrosis Foundation

The Cystic Fibrosis Foundation has created a hub of information that can be accessed by patients anytime. These links are useful for both those who are newly diagnosed, or those with an existing diagnosis.

View Support from the Cystic Fibrosis Foundation

• The Cystic Fibrosis Foundation supports a wide range of innovative research programs to discover and develop new and effective cystic fibrosis therapies.

• View Research and Clinical Trial Information Research and Clinical Trials | Cystic Fibrosis Foundation

The Adult Cystic Fibrosis Patient Advisory Council is made up of adults with cystic fibrosis and cystic fibrosis care team members. The mission of the council is: “To assist the adult cystic fibrosis community by offering education, mentorship and assistance when transitioning to adult care while also serving as a liaison to the health care providers.”

To contact the council regarding a comment or an issue, email necfadvise@gmail.com.

Watch a video about the Adult Cystic Fibrosis Patient Advisory Council
 

The Pediatric Cystic Fibrosis Program at Children’s Nebraska began in the late 1950s. The Adult Cystic Fibrosis program works closely with the Pediatric Cystic Fibrosis program to assure a well-coordinated transition from pediatric to adult CF care. This is done through a Transition Clinic one to two times a year where the adult cystic fibrosis team comes to a patient’s last visit in the pediatric program for a chance to meet the adult providers face-to-face, learn about the adult approach to cystic fibrosis care, and to answer any questions the patient and families may have prior to transitioning.