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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.

Bylaws


Application process


In order to achieve a diverse representation and work towards our mission the Council has created an application process for potential members. The CF Parent Advisory Council will review all new applications at monthly meetings. Council will then vote to fill available seats.

Size


The council will strive for membership of no less than 5 constant members and no more than 12 members at any given time.

Terms


Commit to serve on the CF Parent Advisory Council for a minimum of 2 years. Terms begin at approval of application. Members will consist of parents of child/children with Cystic Fibrosis who attends the Children's Mercy Cystic Fibrosis Center.

Attendance


Consistent and active attendance is vital to the purpose of the Council. Each member is strongly encouraged to attend and participate in all CFPAC meetings and conference calls. Council members are required to attend 75% of the monthly meetings within a 12month period either in-person or phone/videoconference. It will be assumed all members will be in attendance. If a member cannot attend, out of courtesy for the group he/she will notify any member of the council or the Social Workers for the CF Center. Meetings are subject to be canceled or rescheduled if majority of members are unavailable. Meetings shall last up to 90 minutes.

Members who do not live in the KC Metro area but have a child seen at the CMH CF Clinic are also welcome to serve on the CMH PAC and can participate by phone or videoconferencing.

Member Expectations


We can accommodate a wide variety of interests, energy levels and abilities to attend meetings. The work will be enormously rewarding and will certainly generate fellowship and friendship among our local families. However, it is important to note that this council will not meet the needs and capacity of a Support group.

  • Action oriented group with expectations of time investment outside of the meetings

  • Respectfully listen and tactfully discuss ideas, issues and concerns

  • Respect the privacy and confidentiality of other council members, CF patients/their families and all staff

  • Serve as advisory resource to administration and staff of the CF Center and its programs

  • Advocate for the development of programs to improve the quality of care

  • Assist in development and review of educational materials

  • Help create and strengthen community awareness


Bylaws will be reviewed on a regular basis once Council is fully functioning. Any articles of these Bylaws may be added, deleted, or amended by majority of the vote of at least 2/3 of the council.