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Rare Patient Family Advisory Council

The Rare Patient Family Advisory Council will work in partnership with the Children’s Mercy staff members to advocate on behalf of families for the best quality of care. The council will serve as a resource for parents or guardians to provide input on policies and procedures, enhance communication, and expand education for patients and families in both inpatient and outpatient settings.

 

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 Patient Family Advisory Council will review all new applications at monthly meetings. Council will then vote to fill available seats. In order to apply to become a Rare PFAC family member you shall be:

  • users of Children’s Mercy services
  • parents or primary caregivers of patients or former patients who have received a diagnosis of a rare condition and/or remains undiagnosed at the time of the application
  • representative of the diverse communities and populations served by Children’s Mercy

Size

The council will strive for membership of no less than 8 family members and no more than 14 family members at any given time. In order to ensure diversity of council members, only one family representative may serve on the PFAC at any given time. Children’s Mercy staff are non-voting members unless they are representative as a parent or primary caregiver of a patient.

Terms

Commit to serve on the Rare Patient Family Advisory Council for a minimum of 2 years. Terms begin at approval of application.

  • At the end of a two (2) year term, active Rare PFAC members who have met membership qualifications may be invited to serve another two (2) year term.
  • Attendance records are reviewed every six months and appropriate communication and action is facilitated by the PFAC Chair. Excused absences due to health care needs are excluded from the attendance expectation.
  • PFAC members may serve an unlimited number of consecutive terms.
  • PFAC members wishing to terminate their membership or request a leave of absence must provide written notice of one (1) month to the Chairperson.

Section 6: Removal

Any member of the Rare PFAC may be removed at anytime by majority vote for, but not limited to, behavior not aligned with Children’s Mercy mission and any conduct unbecoming of a PFAC member.

Attendance

Consistent and active attendance is vital to the purpose of the Council. Each member is strongly encouraged to attend and participate in all PFAC meetings and conference calls. Council members are required to attend 50% of the meetings within a 12 month 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 (identified staff) as soon as possible via email. Meetings are subject to be canceled or rescheduled if majority of members are unavailable. A quorum of 50% either in person or electronically (or a combination) is required to vote on issues. All decisions that require a vote need a simple majority to pass.

Officer Elections

Council members can nominate themselves or other members for leadership roles. Elections will be held every June as terms will be limited to a year with a one-time renewal option. All new positions will go into effect July 1st and end June 30th of the following year.

Chair

Organize and lead meetings, including defining agenda and action items. The Chair will be the PFAC representative at official meetings when needed. The Chairperson must be available to attend 80% of the scheduled meetings

Secretary

Support the Chair in his/her duties including serving as acting Chair during the Chair’s absence, record minutes, track the member volunteer hours associated with this PFAC and submit them to FCC Program Managers.

Member Expectations

The council will serve as an action-oriented group, with expectations of time investment outside of the meetings. However, it is important to note that this council will not meet the needs and capacity of a Support group.

Members will:

  • Serve as an advisory resource to administration and staff.
  • Advocate for education, and clinical programs to improve the quality and accessibility of care.
  • Assist in the development and review of educational materials.
  • Respectfully listen and tactfully discuss ideas, issues and concerns.
  • Respect the privacy and confidentiality of council members, their families and all staff.
  • Actively participate with expectations of time investment outside of the meetings.

Any articles of these Guidelines may be added, deleted, or amended by majority of the vote of at least 2/3 of the council.