Working Together to Find an Effective Treatment for NORSE & FIRES

A global initiative to advance research, connect and support families and medical professionals, and improve outcomes for patients with New Onset Refractory Status Epilepticus (NORSE) and its sub-type, Febrile Infection-Related Epilepsy Syndrome, (FIRES).

  • A healthcare professional researching on a laptop at a desk in a well-lit office with large windows and trees outside.

    For Medical Professionals

    We are building a centralized hub for healthcare providers seeking the latest in NORSE and FIRES care and research.

  • An adult woman with glasses leaning in to comfort a young girl with dark hair in a wheelchair outdoors, surrounded by trees.

    For Patients & Families

    The NORSE Institute provides support, information, and opportunities to connect with others who understand what you’re facing.

A doctor with curly hair and glasses wearing a white lab coat holding a tablet in a professional setting
Illustration of three neurons with cell bodies, dendrites, and axons

Our Mission

The NORSE Institute supports research, treatment, and the global community of patients, families, and clinicians working to improve outcomes and long-term quality of life.

  • In layman’s language, NORSE refers to the unstoppable, prolonged seizures that strike suddenly from out of the blue with no clearly identifiable cause in healthy people without epilepsy. 

    NORSE stands for New Onset Refractory Status Epilepticus where Status Epilepticus refers to the prolonged, life-threatening seizures.

    Refractory refers to the seizures that remain resistant to drugs that usually are effective in stopping them but not in these cases. And New Onset refers to the unexpected, sudden appearance of these seizures that seem to have no apparent cause in people who do not have epilepsy. 

    Read more

  • Febrile Infection-Related Epilepsy Syndrome (FIRES) is a subtype of NORSE in which patients experience where seizures follow a fever occurs between two weeks and twenty-four hours before seizure onset and within two weeks of onset.

    Once conceptualized as a pediatric syndrome separate from NORSE, FIRES is now defined as a subtype within the overall category of NORSE.

    FIRES affects both adults and children and is no longer considered a separate condition from NORSE.

Our Global Network

While headquartered in the United States, the NORSE Institute collaborates with medical professionals and families across the globe.

team of NORSE experts

Contribute Your Expertise

We welcome contributions from clinicians, researchers, and medical professionals who want to help expand and refine the knowledge base on NORSE and FIRES. If you’ve published articles, recorded podcasts, or have insights or resources that can you believe could inform others, we’d love to hear from you.

We include research updates and opportunities to collaborate or participate in research on our website and in our NORSE Research Bulletin emailed directly to a large community of medical professionals.

If you’ve been directly involved in the clinical care of a NORSE patient and would like to be included in the NORSE Medical Directory we are developing, please contact us.

A young boy with Febrile Infection-Related Epilepsy Syndrome lying in a hospital bed surrounded by medical equipment, monitors, and tubes, with his eyes closed.

Help support our work on NORSE & FIRES

Too many families face this devastating illness with no answers, limited treatments, and little support. The NORSE Institute is a 501(c)(3) charitable organisation through the fiscal sponsorship of CURE Epilepsy.

Your donation helps fund our work in life-saving research and global collaboration.