NORSE & FIRES Family Meeting
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.
What to expect
Led by the NORSE Institute and shaped by community input, the meetings are informal, respectful, and grounded in lived experience. You don’t need to prepare anything or turn on your camera, just come as you are.
Meetings are held monthly via Zoom, using the same link each time for ease of access. Each session focuses on different topics relevant to living with or caring for someone with NORSE or FIRES.
The atmosphere is welcoming and respectful all voices and experiences are valued. Past topics include bereavement support, treatment updates, and caregiver wellbeing.
Who should attend?
Our NORSE & FIRES Family Meetings are open to anyone affected by these conditions: patients, caregivers, family members, friends, and clinicians.
Whether you’re newly navigating this journey or have years of experience, these meetings provide a supportive space to connect, share, and learn.
Commitment to Respect & Confidentiality
Our meetings are a safe, confidential space. Please respect everyone’s experiences and keep what’s shared private. Together, we build a caring community for those touched by NORSE and FIRES.
2025 Meeting Dates & Times (ET)
Join our Zoom meetings using this link:
https://zoom.us/j/7103908164?pwd=dCisT3VS2eHFB1SMokTpi6UJXE0vG8.1&omn=98923106902
How to Get Involved
Do you have ideas for future meeting topics or want to share your story? We’d love to hear from you.
Contact us here to suggest topics or speakers. Your input shapes our community and helps improve support for families affected by NORSE and FIRES.
Join our NORSE & FIRES Family Facebook Group
We also encourage you to join our private NORSE & FIRES Family Facebook Group. The group is moderated and administered by medical professionals and families who have experienced NORSE firsthand.
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.