Jeavons Syndrome Awareness Day

Jeavons Syndrome Awareness Day takes place November 13 each year

November 13

Don’t forget about Jeavons Syndrome Awareness Day, add it to your calendar now!

Jeavons Syndrome Awareness Day

CURE Epilepsy is honored to have started this awareness day in 2023 to help shed light on one of the many rare epilepsies. Join us again in 2024 for Jeavons Syndrome Awareness Day! Learn more about Epilepsy with Eyelid Myoclonia (EEM), formerly known as Jeavons syndrome, and share resources below with your community to help raise awareness. All the graphics found on this page (and more) can be accessed here so you can easily download and share them. Don’t forget to wear blue on November 13 for Jeavons Syndrome Awareness Day!

Why is awareness important?

Jeavons syndrome is a rare epilepsy (so it is less known) and it is commonly misdiagnosed!

What is Jeavons Syndrome?

Epilepsy with eyelid myoclonia (EEM), also known as Jeavons syndrome, is a rare, generalized epilepsy syndrome with onset usually occurring between 1 to 15 years of age, with peak onset between 6 to 8 years of age. Children typically present with prominent eyelid myoclonia, which is a jerking or flickering up of the eyelids associated with the eyes rolling up, typically occurring many times in a single day. Eyelid myoclonia may be associated with absence seizures and eye closure sensitivity. Other seizure types may be present in people with EEM as well. Females are affected more than males at a 2:1 ratio.

Jeavons Syndrome Patient Health Data Collection Program

On behalf of the Jeavons syndrome community, CURE Epilepsy is partnering with RARE-X, a nonprofit organization dedicated to finding a cure for rare syndromes and conditions. Due to the rarity of EEM, health data that can be used for research into the condition is scarce. The Jeavons Syndrome Patient Health Data Collection Program aims to compile data from patients across the world to better inform researchers on EEM and accelerate progress on new treatments. This program may eventually give patients the opportunity to participate in clinical trials.

Explore the Program