The CNOC Family Advisory Council brings together patients, parents, and caregivers with lived experience in congenital heart disease and cardiac neurodevelopment. The council was created to strengthen the integration of patient and family voice across CNOC’s work, including research, education, clinical resources, outreach, advocacy, and committee-based projects.
Families and patients bring essential expertise to the field of cardiac neurodevelopment. Their experiences help identify what matters most in real life, where gaps exist in care and support, and how CNOC’s work can better reflect the needs of children, adolescents, adults, and families impacted by congenital heart disease.
The Family Advisory Council serves as a collaborative space where lived experience and professional expertise come together to support CNOC’s mission.
Purpose of the Family Advisory Council
The purpose of the CNOC Family Advisory Council is to:
- Elevate the voices of patients, parents, and caregivers within CNOC.
- Support meaningful family and patient involvement across CNOC committees and initiatives.
- Provide feedback on research, education, outreach, resources, and communication efforts.
- Help ensure CNOC’s work reflects the priorities, needs, and lived experiences of the congenital heart disease community.
- Build stronger partnerships between families, clinicians, researchers, and professionals working in cardiac neurodevelopment.
Why Family Partnership Matters
Patient and family partnership helps ensure that CNOC’s work reflects the real-life experiences, priorities, and needs of the congenital heart disease community. By including lived experience alongside clinical, research, and professional expertise, CNOC can better support meaningful research, education, resources, and systems of care for individuals and families impacted by CHD.
How the FAC Supports CNOC
Family Advisory Council members may support CNOC through participation in advisory meetings, committee collaboration, resource development, research feedback, outreach efforts, and special projects.
Members are matched with CNOC committees or workgroups based on their interests, experiences, and the needs of each committee. This allows advisory members to contribute in meaningful ways while helping committees include patient and caregiver perspectives in their work.
Examples of areas where advisory members may contribute include:
- Reviewing family-facing materials
- Providing feedback on research priorities or study materials
- Supporting educational resources
- Sharing patient and caregiver perspectives with committees
- Helping improve communication between CNOC and the broader CHD community
- Supporting outreach and awareness efforts
- Advising on topics related to neurodevelopment, mental health, learning, transition, and family support
What Members Can Expect
Family Advisory Council members will have opportunities to participate in monthly advisory meetings, contribute to CNOC committee work, provide feedback on projects or resources, and share lived-experience perspectives in a collaborative setting. Members will be supported by FAC leadership and matched with areas of CNOC work based on their interests, experience, and availability.
Participation in the Family Advisory Council is voluntary, and members are encouraged to contribute in ways that align with their capacity, experience, and interests.
Who Can Join?
The CNOC Family Advisory Council welcomes individuals with lived experience related to congenital heart disease and cardiac neurodevelopment, including:
- Parents and caregivers of children with congenital heart disease
- Adolescents or adults living with congenital heart disease
- Family members with lived experience navigating neurodevelopmental, learning, mental health, or psychosocial needs related to CHD
- Individuals interested in helping shape research, education, resources, and family-centered support within CNOC
No professional background is required to participate. The most important qualification is lived experience and a willingness to share perspective in a thoughtful, collaborative way.
Time Commitment
The estimated time commitment is approximately 2–4 hours per month, depending on the advisory member’s committee placement, current projects, and voluntary level of involvement.
The full Family Advisory Council will meet monthly. Advisory members may also participate in committee meetings or project-based work depending on their assigned committee or area of interest.
Interested in Joining?
Patients, parents, and caregivers interested in joining the CNOC Family Advisory Council are encouraged to apply.
Leadership
The CNOC Family Advisory Council is led by:
Nikki Cannata, FAC Chair
Carissa Ostrom, FAC Vice Chair
Together, the FAC leadership team works to support advisory members, coordinate committee integration, and strengthen the role of patient and family partnership within CNOC.