Understanding whether the long-term follow-up (LTFU) system is working for families is critical to measuring the success of newborn screening (NBS) and understanding why some families are lost to follow-up. Caregivers were recruited from six pediatric specialty care clinics. Data was gathered from caregivers via six focus groups (n=24) and open-ended responses on a survey (n=33). Caregiver participants represented a wide range of NBS-related conditions and children’s ages. While this is not the first study to gather caregivers’ input, it is unique in its breadth of perspectives (e.g., metabolic, endocrine, hemoglobinopathy, etc.) and its focus on LTFU. When asked about goals for their children, caregivers identified health-related goals (i.e., ability for children to care for themselves, not being hindered by diagnosis) and non-health related goals (i.e., defining themselves outside of disease, participating in sports, making friends). In qualifying the LTFU care they want and need for their child and the key factors that influence access and engagement, caregivers identified three themes: communication and relationships with providers; care team roles and factors; and care access and utilization factors. The themes identified are not disjoint; they are intertwined and collectively illustrate the lived experiences of families at the epicenter of LTFU care.