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.
Supporting Healthcare Professionals
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Clinical Resources
We provide in-time recommendations for treatment alternatives for patients in the acute phase through our medical and scientific advisory board.
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International Case Discussions
We support the monthly international case conferences organized by investigators in the UK (GOSH) and US (Baylor-TCH). These online discussions about challenging NORSE/FIRES cases provide a global platform for sharing knowledge about this rare syndrome.
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Cytokine Analysis
Upon request, we conduct cytokine analyses from biosamples of patients in the acute phase sent to the NORSE/FIRES biorepository at Yale, and provide timely results for that patient that may serve to guide treatment decisions.
Supporting 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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Family Registry Database
The portal to the NORSE Family Registry is on our website. This Registry captures patient information in a comprehensive database
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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 Biorepository
Our open, collaborative NORSE/FIRES biorepository at Yale currently has over 120 cases.
We handle all the consents, pay for shipping and share remaining samples and clinical data with qualified investigators.
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Scientific Conferences & Meetings
Our annual Scientific Symposium and Family Conference, brings together medical professionals, patients and their families to share updates and insights across disciplines.
We also host the annual NORSE Roundtable meeting held in conjunction with the American Epilepsy Society annual meeting.
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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 Daniel in a medically induced coma and tried every treatment available. None of them worked. Daniel died less than three months later, never regaining consciousness.
Daniel’s doctors had no explanation for his illness and his autopsy report found no identifiable cause. His 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 brought together families, clinicians and basic scientists who experience this rare, mysterious illness from different perspectives to work together to solve the puzzle of these devastating seizures.
Her goal was simple but ambitious: to make sure no family has to face NORSE or FIRES without answers, support, or hope for better treatment.