There are many diverse organizations within the epilepsy community, which address the needs of people with different types of epilepsy, are focused on research, or the education and training of professionals with epilepsy.

Epilepsy Leadership Council

• NAEC is a member of the Epilepsy Leadership Council (ELC), previously referred to as Vision 20-20, which is a broad collation of consumer, governmental, health professional, and advocacy organizations working to improve care for and advocate for people with epilepsy and their caregivers. Each ELC membership organization contains a wealth of patient resources. Member organizations of the ELC include:
  • Aicardi Syndrome Foundation
  • American Clinical Neurophysiology Society (ACNS)
  • American Epilepsy Society (AES)
  • Batten Disease Support and Research Association
  • Bow Foundation
  • Centers for Disease Control and Prevention (CDC)
  • Chelsea’s Hope Lafora Children Research Fund
  • Child Neurology Foundation
  • CURE (Citizens United for Research in Epilepsy)
  • CSWS Epilepsy & Landau Kleffner Syndrome (ESES)
  • Danny Did Foundation
  • Dravet Syndrome Foundation
  • Dup 15q Alliance
  • Epilepsy Foundation
  • Finding A Cure Against Epilepsy and Seizures (FACES)
  • Hope4Harper
  • Hope for Hypothalamic Hamartomas (HH)
  • International Foundation for CDKL5 Research (IFCR)
  • International League Against Epilepsy (ILAE)
  • Jack Pribaz Foundation (KCNq2)
  • Lennox-Gastaut Syndrome (LGS) Foundation
  • My Epilepsy Story
  • National Institute of Neurological Disorders and Stroke (NINDS)
  • NORSE Institute
  • PCDH19 Alliance
  • Ring14 USA Outreach, Inc.
  • Seizure Tracker
  • TESS Research Foundation
  • Tuberous Sclerosis Alliance (TS Alliance)
  • Veterans Health Administration (VHA): Epilepsy Centers of Excellence (ECoE)
  • Wishes for Elliot

Additional Patient Resources:

• Anti-Epileptic Drug Pregnancy Registry: A registry for research to determine the safety of anti-epileptic drugs for pregnant women and their babies.
• My Seizures, Know More: A 6-question tool designed to empower people living with epilepsy by providing personalized questions for them to discuss with their doctors.
• Rare Epilepsy Network (REN): A network representing patients with rare epilepsy designed to establish a registry that will allow for patient-centered research.
• Social Security Disability Help: A nonprofit organization with information about how people with epilepsy can apply for Social Security Disability Insurance.
• Transition of Care: Helpful tips and tools to help people with epilepsy and their caregivers navigate the transition from a child epileptologist to an adult epileptologist.
• Types of Seizures: A detailed breakdown of the many different types of seizures.