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Cystic Fibrosis Patient Family Advisory Council


The CF PFAC works in partnership with the Cystic Fibrosis Clinic to advocate on behalf of parents and patients for the best quality of care. The council serves as a resource for parents to further influence policies and procedures, enhance communication, and expand education for patients and families in both inpatient and outpatient settings.

Accomplishments

 

  • Advocated for new exercise equipment on 6 Henson for inpatient CF patients

  • Provide CF PFAC updates in CF Center quarterly newsletter

  • Participation and collaboration with annual CF Education Day and Infant Toddler Education Day

  • Advocating for improved communication with families by email. CF List Serve is now a viable tool for communication between families and clinic

  • Collaborated with CF Team on how to improve and increase CF Foundation recommended quarterly CF appointments

  • POPS mentorship program- majority of members are now trained mentors

  • Assistance and input with CF Depart paperwork and CF Clinic Action Plan

  • Continued support with CF transition program to adult care

  • Involvement on CF Foundation recommended annual mental health screens

  • Input on inpatient expectations guidelines document

  • Collaboration on CMH Cystic Fibrosis inpatient handbook

Application

If you have read through the bylaws and feel like this committee would be a good fit for you, please fill out an application.

Contact Us

Ashley Severin
anseverin@cmh.edu

Micaela McKenna
mlmckenna@cmh.edu

Sheryl Chadwick
Program Manager, Patient and Family Engagement
sachadwick@cmh.edu

Parents Offering Parent Support (POPS)

Children's Mercy offers a program called Parents Offering Parent Support (POPS), a network of trained parent volunteers who mentor other parents through the challenges of their child's health condition. Click the button below to learn more about requesting the support of a mentor or becoming a mentor yourself.