Patient & Family Partner Program

About Us

The Adult Congenital Heart Disease Patient & Family Advisory Council (PFAC) aims to improve patient care and outcomes by identifying barriers, collaborating with departmental and hospital staff, and implementing new methods and programs to support the 3,000+ patients and families cared for by Stanford Medicine’s Adult Congenital Heart Program. 

Recent Accomplishments

• Recruiting
  In 2025, the PFAC recruited two new members, including onboarding one member as a new volunteer to the Patient & Family Partner Program. This achieved half of our 2024 recruitment goal.
  
  
• Back to Basics: Health Informaton Management
  In July 2025, the PFAC hosted Back to Basics: Health Information Management, a program focused on adolescent and young adult patients and their families. It explored various paths for navigating the transition from pediatric to adult care and encouraged patients to become advocates for their own health.
  
  Speakers included Anitra Romfh, MD from the Adolescent and Young Adult Transition Clinic; Kristina Marie Fontecha-Gregory, RN and PFAC Co-Staff Advisor; and a panel of patients, clinicians, and families with experience transitioning to adult congenital heart disease care.

Future Goals

• Adult Congenital Heart Association: Heart to Heart Regional Conference
  In 2026, the PFAC is excited to collaborate with the Adult Congenital Heart Program at Stanford Medicine at the 2026 Heart to Heart Regional Conference. The goal of the event is to foster connection, community, and fellowship with ACHD patients throughout the Bay Area. The event will be held in the spring and will feature speakers from the PFAC and Stanford Medicine clinicians. 
  
  
• Recruiting
  Recruitment remains a priority for the PFAC, with a goal of 10-12 staff and volunteer members.