Overview
New-onset refractory status epilepticus (NORSE) is a rare and serious neurological condition in which a previously healthy person suddenly develops continuous or near-continuous seizures that do not respond to standard anti-seizure medications. The term 'refractory' means the seizures are very difficult to stop. In many cases, no clear cause can be found even after extensive testing, and when this happens it is sometimes called 'cryptogenic NORSE.' A related term, FIRES (Febrile Infection-Related Epilepsy Syndrome), is used when NORSE occurs in children or young adults following a fever or mild infection. NORSE affects the brain by causing prolonged, uncontrolled electrical activity that can lead to brain swelling, damage, and long-term complications. Patients typically need to be placed in a medically induced coma in an intensive care unit (ICU) to try to control the seizures. Even after the acute phase resolves, many patients go on to develop chronic epilepsy, memory problems, and cognitive difficulties. The treatment landscape for NORSE remains challenging. There is no single proven cure. Treatment involves aggressive use of multiple anti-seizure medications, anesthetics, and increasingly, immunotherapy (treatments that calm the immune system), since an overactive immune response is suspected in many cases. Ketogenic diet, a high-fat and very low-carbohydrate diet, has also shown promise in some patients. Research is ongoing to better understand the causes and develop more effective treatments.
Also known as:
Key symptoms:
Continuous or repeated seizures that do not stop with standard medicationsLoss of consciousness or unresponsivenessConfusion or altered mental stateFever or mild illness before seizure onsetInvoluntary jerking or shaking of the bodyDifficulty breathing during seizuresMemory problems after the acute phaseDifficulty thinking clearly or concentratingPersonality or behavioral changesDifficulty speaking or understanding languageWeakness or coordination problemsChronic epilepsy developing after the initial episodeFatigue and low energy levels
Clinical phenotype terms (37)— hover any for plain English
Sporadic
Usually appears on its own, not inherited from a parent
Variable
Can begin at different ages, from infancy through adulthood
FDA & Trial Timeline
1 eventXuanwu Hospital, Beijing — NA
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for New-onset refractory status epilepticus.
1 clinical trialare actively recruiting — trials can provide access to cutting-edge therapies.
View clinical trials →Specialists
View all specialists →No specialists are currently listed for New-onset refractory status epilepticus.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to New-onset refractory status epilepticus.
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Caregiver Resources
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Social Security Disability
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Questions for your doctor
Bring these to your next appointment
- Q1.What is the likely cause of the seizures, and have all possible causes been ruled out?,Would immunotherapy be appropriate, and if so, which type and when should it start?,Should we consider the ketogenic diet, and how would it be started and monitored?,What is the long-term outlook for seizure control and cognitive recovery?,What rehabilitation services should be started, and when?,Are there any clinical trials or research studies that might be appropriate?,What is the seizure emergency plan, and what rescue medications should we have at home?
Common questions about New-onset refractory status epilepticus
What is New-onset refractory status epilepticus?
New-onset refractory status epilepticus (NORSE) is a rare and serious neurological condition in which a previously healthy person suddenly develops continuous or near-continuous seizures that do not respond to standard anti-seizure medications. The term 'refractory' means the seizures are very difficult to stop. In many cases, no clear cause can be found even after extensive testing, and when this happens it is sometimes called 'cryptogenic NORSE.' A related term, FIRES (Febrile Infection-Related Epilepsy Syndrome), is used when NORSE occurs in children or young adults following a fever or mil
How is New-onset refractory status epilepticus inherited?
New-onset refractory status epilepticus follows a sporadic inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
Are there clinical trials for New-onset refractory status epilepticus?
Yes — 1 recruiting clinical trial is currently listed for New-onset refractory status epilepticus on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.