The creation of an international NORSE/FIRES virtual consultation forum.

BACKGROUND

Febrile infection-related epilepsy syndrome (FIRES) and New-Onset Refractory Status Epilepticus (NORSE) are rare, devastating conditions characterized by sudden-onset seizures in previously healthy individuals. Management is hindered by a limited evidence base, a complex pathophysiology involving innate and adaptive immune dysregulation, and the "trial-and-error" nature of treating medication-resistant seizures within isolated clinical settings.

OBJECTIVE

To bridge gaps in clinical experience and evidence, we established a recurring virtual international case-based conference that provides real-time multidisciplinary guidance for clinicians managing the acute and post-acute phases of FIRES and NORSE. Since inception in September of 2024, the monthly sessions have utilized a virtual platform to reach a global audience. Standardized 15-30-minute presentations highlighting clinical history, diagnostics, and immunomodulatory interventions were followed by moderated peer-to-peer dialogue. Outreach has been facilitated by the NORSE Institute, and the program achieved CME accreditation in January of 2026.

RESULTS

Over an 18-month period, the initiative hosted 22 sessions discussing 40 cases (85% pediatric, 15% adult). Attendance stabilized at a median of 30-40 participants, peaking at 70, with consistent representation from 3 to 8 countries per session. Participants included epileptologists, neurointensivists, immunologists, rheumatologists, and researchers from both community hospitals and quaternary centers. Primary clinical inquiries focused on the duration and escalation of immunotherapy, diagnostic differentiation, and care transitions.

CONCLUSIONS

This international conference model represents a shift toward a collaborative, global expertise framework, effectively "democratizing" specialized knowledge for refractory status epilepticus, especially those possibly caused by rare neuroinflammatory diseases. While currently a descriptive, observational experience lacking patient-level outcome data, the initiative serves as a scalable template for developing a "community of learners." Future efforts will focus on expanding outreach to adult providers and underrepresented geographic regions to further standardize the evidence-based care of FIRES and NORSE.