About the NORSE Institute
We are 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).
Our Strategy
To increase the awareness of NORSE; to stimulate, integrate and support research; and to develop a shared community of NORSE researchers and families.
The NORSE Institute is a 501(c)(3) charitable organisation through the fiscal sponsorship of CURE Epilepsy.
Time-Sensitive Resources for Healthcare Professionals
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NORSE Institute Medical & Scientific Advisory Board (MSAB)
Presiding clinicians can get insights to their acute case from the MSAB by sending a de-identified patient summary and their questions to the contact page via their center’s professional email. Case discussion will occur via group email.
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International Case Conference
An active, acute NORSE/FIRES case is presented online to an international audience, usually every second Friday of the month at 9am ET. These brainstorming sessions are organized by Eyal Muscal, MD (Baylor/TCH) and Marios Kaliakatsos, MD (GOSH). To present your case on the program, or to confirm schedule/time, email: Divya.Thomas@bcm.edu
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Cytokine Analysis from NORSE/FIRES Biorepository
For patients in the acute phase, cytokine results from donated bio samples can be reported back promptly which may guide treatment. Yale handles the consent process with the families and covers the cost of shipping.
Resources for Patients & Families
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Community Support Programs
We host monthly online support meetings that bring together patients, families, and caregivers. These gatherings create connections, facilitate shared experiences, and provide ongoing support throughout the journey.
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Information & Resources
The NORSE newsletter delivers science updates and shared resources to patients and families
Research
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NORSE/FIRES Biorepositories
The NORSE/FIRES biorepositories at Yale and Paris Pitié-Salpêtrière collect and share samples from pediatric and adult patients during the acute and chronic phases.
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Annual Scientific Conferences & Meetings
Annual Scientific Symposium (virtual) features the latest scientific updates.
Annual Family Conference (virtual) brings together doctors and families to learn about NORSE from each other.
Annual NORSE Roundtable luncheon (in-person and virtual) provides venue for research collaboration .
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News Briefs
The NORSE Research Bulletin provides clinicians and scientists updates on NORSE research programs, grant opportunities and relevant publications.
Why We Began
In 2013, just three months after graduating from Stanford University, 22-year-old Daniel Wong was found unresponsive and then gripped by prolonged seizures. He had no history of epilepsy, no known infection or injury. Doctors placed him in a medically induced coma. Every treatment to stop his seizures failed. Daniel died less than three months later, never regaining consciousness.
Doctors had no explanation for his illness and his autopsy report found no identifiable cause. Daniel's mother, Nora Wong, reacted with disbelief and became determined to unravel the mystery of her child’s illness. In 2015, she founded the NORSE Institute with Lawrence Hirsch, MD, (Yale) and Nicolas Gaspard, MD (Erasme Hopital, Brussels) who still serve as co-chairs of the Institute’s medical and scientific advisory board.
As Executive Director, she has motivated families, clinicians and basic scientists to work together to solve the puzzle of this devastating syndrome. Her goal is simple but ambitious: to make sure no family has to face NORSE or FIRES without support or hope for better treatment.