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, 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)
- CURE (Citizens United for Research in Epilepsy)
- Danny Did Foundation
- Dravet Syndrome Foundation
- Dup 15q Alliance
- Epilepsy Centers of Excellence, Department of Veterans Affairs
- Epilepsy Foundation
- Hope for Hypothalamic Hamartomas
- International Foundation for CDKL5 Research
- LGS (Lennox-Gastaut Syndrome) Foundation
- My Epilepsy Story
- National Institute of Neurological Disorders and Stroke
- PCDH19 Alliance
- Preventing Teen Tragedy
- RE Children’s Project
- Seizure Tracker
- Tuberous Sclerosis Alliance
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.
- HERO (Human Epilepsy Research Opportunities): A website dedicated to linking people with epilepsy-related clinical research studies.
- 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.
- Social Security Disability Help: A nonprofit organization with information about how people with epilepsy can apply for Social Security Disability Insurance.