Thank you for your interest in joining the Adult Congenital Heart Association (ACHA) Patient & Family Advisory Board (PFAB).
ACHA is committed to creating a culture where patients and families across the country are empowered to communicate with Board and staff leadership in a collaborative effort to promote understanding and outcomes. The PFAB ensures the existence of an effective organizational mechanism for receiving and responding to diverse consumer perspectives on an ongoing basis. Members of the PFAB provide advice on current and proposed ACHA initiatives and help to ensure the effective delivery of those initiatives in their local communities. The PFAB functions as a standing advisory body to the ACHA Board of Directors (BOD).
- Individuals interested in serving on the PFAB should complete the application form. Applications will be reviewed by the Nominating Committee of the ACHA Board of Directors (BOD). Selected candidates will be interviewed by the Nominating Committee and a final slate of candidates will be presented to the BOD for approval.
- All individuals with CHD, age 18 and older, as well as immediate family members (spouse/partner, father, mother, son, daughter, sister, brother) of an individual with CHD, are eligible to apply.
- PFAB members shall serve terms of three (3) years. Members may be elected for no more than two (2) consecutive terms.
- ACHA values diversity, equity and inclusion. As such, the composition of the PFAB in terms of gender, cultural background, race, age, religion, professional and personal skills, life experience, sexual orientation and type of CHD will be evaluated annually to ensure it is a representative body of the full ACHD population.
- To ensure equitable geographic representation, the PFAB will always be comprised of a minimum of one (1) representative from each of the nine (9) divisions of the United States as determined by the U.S. Census Bureau. These geographical divisions are:
New England – ME, NH, VT, MA, RI, CT
Middle Atlantic – NY, NJ, PA
South Atlantic – DE, MD, DC, WV, VA, NC, SC, GA, FL
East North Central – WI, MI, IL, IN, OH
East South Central – KY, TN, MS, AL
West North Central – ND, SD, MN, NE, IA, KS, MO
West South Central – OK, AR, TX, LA
Mountain – MT, ID, WY, NV, UT, CO, AZ, NM
Pacific – WA, OR, CA, HI, AK
- The number of PFAB members will be no less than twenty (20) and no more than thirty (30) at any given time.
- The PFAB will meet no less than four (4) times per calendar year. Meetings will occur virtually. The PFAB may determine at its own discretion and expense, and with the approval of the ACHA Management, if it wishes to meet in-person at any time. Members of the PFAB may also be requested to attend in-person meetings with other volunteer leaders of the organization as deemed necessary by the Board of Directors and CEO.
- All PFAB members are expected to become knowledgeable of, and participate in, ACHA activities, including but not limited to webinars, conferences, advocacy visits, fundraising campaigns and awareness initiatives. Likewise, PFAB members are expected to engage their community in these activities and bring relevant ideas, questions and concerns to the PFAB for discussion.
- Estimated time commitment to serve on the PFAB is 4 – 5 hours per month.
- There is no financial requirement to serve on the PFAB; however, PFAB members are encouraged to make a gift of personal significance and/or fundraise annually for ACHA.
Interaction with BOD
- At its first meeting of each calendar year, the PFAB will elect two officers (co-chairs or some similar titles). The primary responsibilities of the two officers are to:
- Lead and record all PFAB meetings (minutes from PFAB meetings will be provided to the ACHA BOD).
- Represent the PFAB at all ACHA BOD meetings (a PFAB officer will deliver a report at each BOD meeting).
- Participate in all votes that come before the ACHA BOD.
- Ensure a seamless flow of communication between the BOD and the PFAB.
- The two PFAB officers for 2022 are Mindy Beyer (Maine) and Neema Khatri (Washington, DC).
- Former BOD members who have successfully completed their Board service may apply to the PFAB but are ineligible to serve in a PFAB officer role.
- The ACHA Board Chair and ACHA President & CEO serve as ex officio members of the PFAB.
The Adult Congenital Heart Association (ACHA) is the trusted partner of the 2 million+ adults in the United States living with congenital heart disease, bringing together patients, family members and medical professionals to create a community and support network.
VISION: Every adult with congenital heart disease receives specialized cardiac care.
MISSION: To empower the congenital heart disease community by advancing access to resources and specialized care that improve patient-centered outcomes.