Cystic Fibrosis Patient Resources

The faculty and staff at the U-M Cystic Fibrosis Center are committed to supporting your family, both through access to resources in the community as well as through special U-M events designed just for our patients.

Family Education Events 

The Cystic Fibrosis Center is pleased to offer events to support families of our patients.  Our annual education night and retreat draws families from throughout the State, and includes informative presentations as well as an opportunity to meet and interact with other CF families.

U-M Cystic Fibrosis Center Newsletters

The University of Michigan CF Center publishes an annual newsletter highlighting new programs, research, clinical care, and family oriented resources for our patients and all patients with CF.  

Family Advisory Board

The Family Advisory Board plays an important role in the CF Center. By incorporating the thoughts, perspectives and opinions of families into our decisions, we are able to enhance our ability to provide family-centered care.

Amongst many projects, we have constructed a new patient binder, with information that meets the educational needs of each developmental stage of CF.

Our families revised the heart healthy hospital menu to a high calorie, high fat menu that meets the needs of people with CF. 

The council meets from September to June to discuss pending decisions, quality improvement initiatives and provides input from the family perspective. We are also regularly involved with processes and plans to improve the quality and accuracy of care provided.

Family members and adult patients of University of Michigan Health System CF Center are welcome to volunteer for the council. Our Board consists of members who have children recently diagnosed with CF, to parents of teens transitioning to the adult program and an adult with CF. Dr. Samya Nasr, CF Center Director, is on the Board and we regularly invite staff relevant to any project we are working on. Members serve approximately two-year terms and are recruited from a pool of applicants. 

For more information on joining the Family Advisory Board at University of Michigan Health System, contact the CF Center Coordinator Donna Genyk at 734 764 4123.

Online Resources

  • CF Foundation Compass - Information regarding choosing coverage, navigating insurance coverage, and finding support. 

Newborn Screening Information

Please email us if you would like more information about puberty and fertility from your physician. Social Work will coordinate addressing your questions with you/your child and your physician at your next clinic visit.

Patient Information Guides

Videos from 2015 North American Cystic Fibrosis Conference (NACFC)

Additional resources from the Cystic Fibrosis Foundation