Family Advisory Council (FAC)

• What is the Family Advisory Council (FAC)?

  The Family Advisory Council, or “FAC”, is a volunteer group of heterotaxy parents and adults who partner with Heterotaxy Connection to help make sure that Heterotaxy Connection stays true to its mission to support, empower, and educate our families. FAC members share their lived experience to help shape projects, programs, resources and partnerships that help best serve our families.

• What are FAC working groups?

  The FAC includes several smaller working groups that help focus on specific areas of need in our community. Currently we have 4 working groups: Family Support & Engagement, Educational Resource Development, Bereavement Care, and Research & Innovation. Each group works on projects that have clear end results, such as developing welcome bags for new families, making agendas for future conferences, and creating brochures for families. FAC members may choose a working group or groups that interests them. Bereaved parents are welcome to participate in any working group, but only bereaved families may join the Bereavement Care working group itself. More information about working groups is at the end of this FAQ sheet, or can be provided to you by contacting rene@heterotaxy.org

• Who can join the FAC or its working groups?

  Any parent or adult with heterotaxy who wants to share their time and perspective to partner with Heterotaxy Connection in this work is welcome! No special background or training is needed, just a willingness to work in a group, respectfully communicate with others, provide thoughtful feedback and ideas, and sharing a commitment to improving the heterotaxy journey for other families.

• What would I be expected to do as a FAC member?

  Members attend monthly meetings and might occasionally be asked to read documents, complete surveys, test out digital tools, and answer questions in-between meetings.

• What is the time commitment?

  We expect that most members will spend no more than 3 hours per month on FAC work. Some months will require less time when there are fewer meetings or in-between meeting activities, and some working groups might occasionally put in more time if there is a specific project they are working on with a deadline. We know your time is valuable, so every meeting will always have clear reasons and things we are working on.

• How often does the FAC meet? Is there a schedule?

  The FAC holds 10 meetings a year. No meetings are held in the months of December or August. The meeting schedule alternates between months where the entire Family Advisory Council meets together to share updates and get ideas from the larger group, and months where each working group meets individually to work on their own projects. In the months of January, April, July, and October, the whole FAC meets together on the 2nd Wednesday of that month at 8 pm ET. In the months of February, March, May, June, September, November, each working group meets during the 2nd week of the month, on a day/time chosen after input from individual members of each group.

• Do I have to attend every meeting?

  We respect that our volunteers have very busy lives, and we are committed to *only* asking you for your time when it will make a meaningful difference for our community. We ask members to try and make as many meetings as they can, ideally a minimum of half each year (5 meetings per year).

• What if my child’s health or my family situation makes it hard to attend or participate at times?

  We know that caring for a child with heterotaxy or managing your own health and/or family needs can be unpredictable, and these things are always the first priority! You can let the FAC leader know and step back temporarily at any time you need. Meeting agendas are always provided at least 1 week in advance, post-meeting summaries & recordings within 1 week of meeting’s end, and you will continue to have access to FAC chat groups and email discussions so that you can stay connected if/when you feel able to do so.

• How does the FAC ensure accessibility for all members?

  All meetings are virtual and scheduled with family life in mind. Members receive a heterotaxy.org email address and use dedicated Google Chat spaces to stay connected in an easy-to-use manner that allows communication from across time zones and at times that are most convenient for individual members. We are committed to removing barriers to participation for our FAC members. If you have a specific accommodation or support need you would like to discuss, please reach out to our FAC leader directly at: rene@heterotaxy.org

• Are there terms or limits on the time I can serve on the FAC?

  We ask members to commit to a two year term, with options to renew. This gives everyone the chance to learn from each other, contribute meaningfully, and see projects through completion while also making space for new members. If you find that you cannot complete your full term, contact the FAC lead and they will assist you in transitioning out of the Council.

• What will I gain from joining?

  You will get you to use your experience as a heterotaxy parent or adult to directly shape resources and programs that matter, and see your ideas from the FAC make a real difference in our community.

• I still have questions and/or I am interested in joining who can I contact?

  We would love to hear from you! Please reach out to Rene Harrell, Director of Programs and Community Engagement at rene@heterotaxy.org for more information. Descriptions of specific working groups can be found below:

  1. Family Support & Engagement – Help shape how we welcome and connect families: design care packages, plan Heterotaxy Awareness Day activities, suggest topics for family webinars and workshops.

  2. Education & Resource Development – Review, co-create and share feedback on brochures, guides, and videos and digital tools that educate our families about heterotaxy care.

  3. Research & Innovation – Work with us to identify research questions that matter most to families, create a patient-centered research roadmap and give input on patient registries, studies, and tools to ensure they reflect real family needs and priorities.

  4. Bereavement Care – Help strengthen support for grieving families by creating care packages, newsletters, and digital resources just for our bereaved community, and ensure all programs remain inclusive of bereaved parents.