Rare epilepsy syndromes are specific types of epilepsy

When test results show a group of traits happening together such as seizure types, electroencephalogram (EEG) patterns, and neuroimaging findings, it is considered an epilepsy syndrome.

Syndromes are further identified by age-related markers such as age of onset, seizure triggers, remission, and co-conditions like developmental challenges.

A syndrome is rare if it affects fewer than 200,000 people in the United States

Rare epilepsy syndromes are complex and may be hard to diagnose

Often, these syndromes are overlooked or incorrectly diagnosed, so a long time passes before an accurate diagnosis is made. Finding a treatment can also be challenging because half of all people diagnosed with epilepsy have no known cause.

Having epilepsy does not mean you have an epilepsy syndrome. But knowing if you or a loved one has a rare epilepsy syndrome can help you and your doctor determine the best path toward treatment, management, and care.

Click on the links below to explore more about rare epilepsy syndromes. 

More on Rare Epilepsy Syndromes

Developmental and Epileptic Encephalopathies (DEEs)

Epilepsy and LGS

Epilepsy and Dravet Syndrome

Resources for Rare Epilepsy Syndromes

Discover resources specific to you or your loved one’s rare syndrome

Genetic Testing

How can genetic testing help with a treatment plan for epilepsy?