Join the Growing NORSE/FIRES Online Community
We’re building an online community for individuals and families affected by New Onset Refractory Status Epilepticus (NORSE) and Febrile Infection-Related Epilepsy Syndrome (FIRES) and we’d love you to be part of it.
Our private Facebook group offers a safe, moderated space for people living with NORSE/FIRES and their loved ones to connect, share experiences, ask questions, and support one another. It's co-led by medical professionals and family members with personal experience of NORSE, making it both compassionate and informed.
We’ve also launched a Twitter/X account where we share the latest research, awareness campaigns, and updates from the NORSE Institute.
Whether you're newly navigating a diagnosis, supporting a loved one, or working in the field, we welcome you to:
Together, we can create a stronger, more informed, and more connected community.
Help support our work on NORSE and 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.
