Having a diagnosis such as SCN8A can be overwhelming. There are many different things you or you child might need—such as seizure monitors, specialty equipment, communication devices, and more. We have compiled a list of many different resources to help you begin. If you are connecting with us for the first time, we encourage you to fill out the form through the link below to join our Facebook family support group.
The following list contains links to third party web sites. The Cute Syndrome Foundation is not responsible for the content or privacy policies of these external sites.
SeizurE MONITORS
Specialty equipment
Communication devices
medical flights
Mercy Medical Angels
Miracle Flights
Patient AirLift Services (PALS)
  • ​PALS is a nonprofit that arranges free flights for patients requiring medical diagnoses, treatment, or follow-up who cannot afford or are unable to fly commercially.
seizure dogs
grant organizations
wish organizations
grief support
feeding tube support
family support
school support
Coming soon.
STATE BY STATE INSURANCE
Coming soon.
Miscellaneous 

Awareness Days

Clinician Reference Guide

Discover clinical wisdom about SCN8A from physicians with experience treating this rare disorder. Available in English, German, Spanish, and Portuguese.

Caregiver Support

Our peer support specialists are available virtually to listen to you, encourage you, and help you find the resources you need.

Patient Assistance Grant

This grant offers financial assistance to patients with a confirmed SCN8A diagnosis for medical equipment, therapy devices, educational aids, etc, that are not covered through insurance or other assistance programs.

Checklists and Forms

Emergency Medical Form

Fill out this form and keep on hand to have all medical information readily available in case of emergency.

Transition to Adulthood 

Transitioning to adulthood can be a challenging time for youth with SCN8A. The tools below can help support the transition in healthcare systems and education.​

IEP Checklist

Coming soon.

Child Neurologist New Visit Toolkit

We encourage you to fill out the Child Neurology Foundation's Child Neurologist New Visit Toolkit prior to your first visit with a neurologist or when visiting a new neurologist.

SUDEP Resources

Coming soon.

Seizure Action Plan Checklist