CF Parent Advisory Group

The Cystic Fibrosis (CF) Advisory Group is a committee of parents and adult CF patients that provide feedback to the CHKD CF Center. The group works with the CF team to advance the practice of CF care and to improve the quality of care for patients. The group’s prime objective is to enhance and optimize the medical care and quality of life for people diagnosed with cystic fibrosis. In doing so, its members promote an open learning environment, improved communication between patients and providers and personal empowerment. The group's members, all parents of children with CF or adults with CF, share insights and information about their experiences, successes and  failures.

Goals of Cystic Fibrosis Advisory Group

  • Empower individuals with cystic fibrosis and their families
  • Open communication and active participation by patients and families in the provision of health care
  • Continually improve the quality of care
  • Support ongoing research
  • Confront cystic fibrosis with optimism, love, compassion and solidarity