The following is a guide to resources that can help patients and their families move forward across a range of situations. It is best to read through the checklist prior to the patient’s discharge from the hospital so you can enlist the help of medical staff. They may be harder to reach once you leave the hospital.

The following are terms that may come up in your conversations with medical staff that you should know.

Medicaid waiver programs can offer essential insurance coverage and home-based services that many NORSE patients would not normally qualify for due to income limits.

This article, published in Mayo Clinic Proceedings (May 2019), explores the unique communication challenges that arise when supporting patients and families affected by New Onset Refractory Status Epilepticus (NORSE).