NORSE Scientific Symposium
The NORSE Scientific Symposium is an annual virtual meeting convening global experts to share the latest clinical approaches and basic research in New Onset Refractory Status Epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES).
Scientific & Family Symposium
July 14 & 16, 2026
From Acute to Chronic: How to Tell? What to Do?
Two afternoons online · July 14 & 16, 2026 · 11:00 am – 1:30 pm ET
Many decisions that shape NORSE/FIRES outcomes must be made from the acute to the recovery phase. Yet where one phase ends and the next begins — and what that should mean for treatment — is far from settled.
The open questions we'll take on
- Where does the acute phase end and recovery begin?
- Which biomarkers carry the most weight across the phases?
- When should immune and antiseizure therapy be escalated, and when de-escalated?
- How should we weigh seizure burden against long-term quality of life?
Acute to Chronic — Where's the Line?
Can we even draw a boundary between the acute and recovery phases — and if we can, what should it change about treatment?
When Do We Change Course?
When — and whether — to escalate or de-escalate therapy, and how those choices weigh against quality of life.
Full Session Agendas
| Acute vs. Recovery Phase — Clinical Features | ||
| 11:00–11:05 am | Introduction | Dr. James J. Riviello (Baylor-TCH) |
| 11:05–11:20 am | The concept of the Acute Phase versus the Recovery Phase | Dr. James J. Riviello (Baylor-TCH) |
| 11:20–11:35 am | The spectrum of clinical manifestations through each phase of NORSE | Dr. Andreas van Baalen (Kiel University, CAU) |
| 11:35–11:55 am | Family Panel Discussion (What we see) | Dr. Shabana Ali (UK); Desirae Casas (USA); Massimiliano Cignatta (Italy); Karla Yankowski (USA) |
| The Evolution of Biomarkers Across the Phases | ||
| 11:55 am–12:05 pm | Serum / CSF Biomarkers | Dr. Aurélie Hanin (Paris Brain Institute (ICM)) |
| 12:05–12:15 pm | EEG & MRI Biomarkers | Dr. Ji Yeoun (Jenna) Yoo (Mount Sinai) |
| 12:15–12:21 pm | Genetic Testing — when to test and re-analyze | Dr. Danielle deCampo (CHOP) |
| 12:21–12:25 pm | Family Perspective | Desirae Casas (USA) |
| 12:25–12:30 pm | Break | |
| Antiseizure & Immune Therapy Treatment | ||
| 12:30–12:40 pm | Treatment Overview | Dr. Kristen Fisher (Baylor-TCH) |
| 12:40–12:50 pm | Family Panel Discussion (Treatment) | Family Panel |
| Clinician–Family Communication | ||
| 12:50–1:00 pm | Clinician–Family Communication | Dr. Mark Wainwright (Seattle Children’s) |
| 1:00–1:20 pm | Family Panel Discussion (Communication) | Family Panel |
| 1:20–1:30 pm | Closing & Wrap-up | Dr. James J. Riviello (Baylor-TCH); Dr. Nora Wong |
| 11:00–11:05 am | Introduction | Dr. Krista Eschbach (Children’s Hospital Colorado) |
| 11:05–11:15 am | Treatment De-escalation: how to decide | Dr. Krista Eschbach (Children’s Hospital Colorado) |
| 11:15–11:45 am | Panel Discussion: Treatment Decisions (Dr. Krista Eschbach, moderator) | Dr. Lawrence J. Hirsch (Yale); Dr. Olga Taraschenko (University of Colorado Anschutz); Dr. Marios Kaliakatsos (GOSH); Dr. James J. Riviello (Baylor-TCH) |
| Seizure Management: From Seizure Burden to Quality of Life | ||
| 11:45–11:57 am | Acute Management: seizure number / burden and impact on outcomes | Dr. Lawrence J. Hirsch (Yale) |
| 11:57 am–12:09 pm | Chronic Management: seizure number / burden and quality of life | Dr. Olga Taraschenko (University of Colorado Anschutz) |
| 12:09–12:25 pm | Family Panel Discussion (Seizure Burden) | Dr. Dana Satir (USA); Engin Kam (Turkey); Tara Woodell (USA); Rachel Liew (UK) |
| 12:25–12:30 pm | Break | |
| 12:30–12:45 pm | When to de-escalate immune therapy — are there times to reconsider? | Dr. Marios Kaliakatsos (GOSH) |
| 12:45–1:00 pm | Quality of Life: perhaps the most important definition of outcome | Dr. Krista Eschbach (Children’s Hospital Colorado) |
| 1:00–1:20 pm | Family Panel Discussion (QoL) | Family Panel |
| 1:20–1:30 pm | Closing & Wrap-up | Dr. Krista Eschbach (Children’s Hospital Colorado); Dr. Nora Wong |
Why This Symposium Matters
NORSE/FIRES strikes without warning and remains poorly understood. Data is scarce and until recently, poorly integrated. Our goal is to provide a forum for experts to present their research and engage in Q&A about that research.
We provide a platform for cross-disciplinary learning, collaboration, and action. Presentations often include unpublished emerging data and experimental approaches.
We believe NORSE is a window to understanding refractory status epilepticus, drug-resistant epilepsy and epileptogensis.
What to Expect
The Symposium is focused, fast-paced, and practical. Each session tackles real-world challenges faced by clinicians and researchers, with plenty of time for questions and discussion. Presentations often include emerging data and experimental approaches that haven’t yet made it to publication.
Key elements include:
Themed sessions with global speakers
Focus on clinical application and translational science
Regular updates on the NORSE/FIRES Biorepository
Opportunities to get involved in multi-centre collaborations
A commitment to patient-family centred research priorities
Who Should Attend?
The Symposium is designed for clinicians, scientists, and researchers in pediatric and adult care involving
Neurology and epilepsy
Critical care
Neuroimmunology and rheumatology
Infectious diseases
Genetics, epitgenetics, transcriptomics
Whether you are a NORSE/FIRES pioneer or a newcomer, your voice and expertise are welcome.
If you’re a family member or advocate
While patients and their families are welcome to attend the Scientific Symposium, please note that it is primarily aimed at clinicians and scientists (though some family members may be medical professionals themselves). Many families may prefer the NORSE Family Conference, which offers accessible research updates, opportunities to share lived experiences, and a chance for direct dialogue between families and clinicians.
Previous NORSE Scientific Symposium Recordings
Recordings are freely available for professionals and families who wish to revisit sessions or catch up on what they missed. Each event offers a snapshot of how the field is evolving and where it’s heading next.
Join the next Scientific Symposium
This event is hosted annually in June and our next event will be in 2026. Sign up to our newsletter below and we will send you details and registration information as soon as dates are confirmed.