Nass RD, Taube J, Bauer T, et al. - Researchers conducted long-term follow-up of adult survivors of Febrile Infection-Related Epilepsy Syndrome (FIRES), which is an exceedingly rare and devastating subtype of new-onset refractory status epilepticus (NORSE) and causes refractory epilepsy and permanent neurocognitive impairment. These adults received treatment between 2005 and 2018, as part of the EpiCARE initiative, a European Reference Network for rare and complex epilepsies. Evaluation of six patients with refractory epilepsy following FIRES was performed. Findings suggest the possibility of regaining vital functions and mobility among FIRES survivors, however, they may experience a significant loss of independence and participation due to recurring seizures, structural brain damage, and neurocognitive decline. They suggest the criticality of reduction in disastrous outcomes through the systematic evaluation of rescue therapies within a network of specialized centers.