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CF Family Advisory Board & guests during a CF Education Night!

GOALS OF THE FAB

  • Improve the quality of life for people with Cystic Fibrosis.
  • Serve as advisory resource to CF Care Center administration and staff and its programs.
  • Review recommendations and concerns as identified by patients, caregivers, staff, physicians, or administration.
  • Promote improved relationships between patients, families, and staff.
  • Provide an avenue for patients and families to offer input into policy and new program development.
  • Collaborate as partners with staff, physicians, and administration in the planning and operation of specific programs.
  • Offer ideas and suggestions regarding the policy and practice that affect patient-centered care.
  • Serve in an educational role, as needed or requested, regarding patient/caregiver perception of care and services.
  • Establish a network of local mentors to assist new families.

CURRENT PROJECTS

  •  Host seasonal CF Education Nights on topics of interest to local CF families. Past topics include: "CF & School" and "CF & Mental Health"
  • Partner with Care Team and local CFF Chapter to host annual "CF Caregiver Education Day" in the Fall ​
  • Publish seasonal newsletter featuring updates to our Atrium Health Care Center, bios of Care Team members and CF children, as well as tips and suggestions for life with CF.
  • Communicate regularly with CF families through the charlottecffamilies.org website, blog, and social media.
  • Develop "CF Notebook" for families to keep record of important notes from Clinic and/or educational materials for upcoming or past procedures.
  • Update Cystic Fibrosis Bulletin Board on the 10th Floor of Levine Children's Hospital with current and relevant information for patients and families during hospital visits.
  • Create "Newborn Packets" to be sent home with newly diagnosed families.

WANT TO BE A PART OF THE FAB?

The CF Family Advisory Board meets monthly on Wednesday evenings and volunteers throughout the month to enhance the lives of patients and families living with Cystic Fibrosis. Are you interested in being a part of our team to help improve our local Care Center? Let us know!

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Charlotte CF Families website and CF Family Advisory Board are operated by local CF families with the guidance of the Atrium Health Cystic Fibrosis Program. No advice or recommendations on this page should be taken above that of your CF Care Team. Every person with CF is different. The advice and suggestions on this page are simply a guide to help families feel connected and informed. 
Last Published June 2020 
Site Design by Rebecca Preslar