Resources and Support for Families

Recommended approach for treating status epilepticus in adults and children. Click here(https://www.norseinstitute.org/resource-library/sample-treatment-algorithm-generalised-convulsive-status-epilepticus?rq=treatment%20alg)

Dr. Lawrence Hirsch and Dr. Nicolas Gaspard discuss NORSE research. Listen here(https://manage.wix.com/dashboard/68e675ad-bbbf-42a6-bfe4-932bb8495d64/wix-faq/create/20ccfe34-6dc7-4487-9dec-b7699cd8c4f2?referralInfo=14c92d28-031e-7910-c9a8-a670011e062d#)

This foundational paper published in Epilepsia in 2018 presents the internationally agreed-upon consensus definitions for New-Onset Refractory Status Epilepticus (NORSE) and its subtype Febrile Infection-Related Epilepsy Syndrome (FIRES). Establishing a common language around these rare and complex conditions has been critical in improving diagnosis, research, and treatment approaches worldwide. Find out more(https://www.norseinstitute.org/resource-library/consensus-definitions-of-norse-and-fires-epilepsia-2018?rq=Consensus%20Definitions)

Support for NORSE & FIRES post-hospital recovery and long-term care. Click here(https://www.norseinstitute.org/discharge-planning-guide?rq=Discharge%20Planning%20Guide)

There are now two open, coordinated, and collaborative NORSE/FIRES biorepositories based at Yale (USA) and Paris Pitié-Salpêtrière Hospital (France). They collect samples from adults and children in both the acute and chronic phases of NORSE and FIRES, as well as from control participants. Click here(https://www.norseinstitute.org/norse-biorepository)

The NORSE & FIRES Family Meeting is a monthly online gathering for anyone affected by New Onset Refractory Status Epilepticus (NORSE) or Febrile Infection-Related Epilepsy Syndrome (FIRES). Whether you're a parent, partner, sibling, survivor, or friend, these meetings offer a safe and supportive space to share experiences, ask questions, and feel less alone. Find the next meeting here.(https://www.norseinstitute.org/norse-fires-family-meeting)

The NORSE Family Conference is an annual virtual gathering designed to connect families, survivors, clinicians, and researchers around a shared goal: to improve the care, communication, and long-term outcomes for those affected by NORSE (New Onset Refractory Status Epilepticus) and FIRES (Febrile Infection-Related Epilepsy Syndrome). Find the next conference.(https://www.norseinstitute.org/norse-family-conference)

This innovative study with international expert backing has the potential to transform the lives of FIRES patients worldwide and the results will be applicable to people with epilepsy within the next 5 to 10 years. In the first instance, publication of the surveillance study data will give crucial information about the clinical syndrome, treatments given and subsequent outcomes of affected patients. This data will then be used to create specific guidelines on management to improve patient care for future affected children and families, transferring the new knowledge gained from bench to bedside. Find out more(https://epilepsy-institute.org.uk/eri/research/research-portfolio/extinguishing-seizures-in-fires/)

The Epilepsy Research Institute and Sam’s Superheroes Foundation are delighted to offer a co-funded studentship to support a PhD student to investigate Febrile Infection-Related Epilepsy Syndrome (FIRES) and New-Onset Refractory Status Epilepticus (NORSE). Applications are welcome across the research pipeline, from mechanistic studies to applied care projects. Find out more(https://epilepsy-institute.org.uk/eri/sams-superheroes-foundation-phd-studentship/)

King's College Hospital, London (UK) published a comprehensive paper featuring the NORSE Institute’s treatment guidelines and valuable insights into managing FIRES and NORSE in the UK. 🔗 Read(https://pn.bmj.com/content/practneurol/21/2/119.full.pdf) King's College Hospital's publication(https://pn.bmj.com/content/practneurol/21/2/119.full.pdf)