Seven interviews (1 NORSE; 6 FIRES) were completed between April - August 2023. NORSE onset occurred a median of 7.5 years ago (IQR 6-10). While experiences varied based on NORSE outcomes and amount of time post-illness onset, we identified the following themes: 1) Changes in life experience: All participants described significant disease impact with reduced quality of life (QOL); however, perceived QOL was not always consistent throughout the chronic phase. Some participants described improvements and others reported a decline in QOL. For some caregivers, there was a significant financial impact and roles within the home changed including stopping work to become the primary caregiver for their child. 2) Medical concerns: Patients are often impacted by ongoing seizures and challenges posed by antiseizure medications, as well as other health concerns (e.g., gastrointestinal symptoms, mood and behavior issues). 3) Need for help and support: Caregivers described feelings of isolation and loneliness for themselves and for their child. Some described unmet needs, such as requiring more assistance during the transition out of the hospital and challenges accessing behavioral and mental health resources.