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Rare Epilepsy Network

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Of the 65 million people living with epilepsy worldwide, a significant amount has a rare form of epilepsy.

Though each syndrome/disease/condition is different, people living with rare epilepsies and caregivers share many common seizures, symptoms and side effects. However, because each syndrome population is small in size, research to unlock answers is not moving fast enough.

The Epilepsy Foundation's Rare Epilepsy Network (REN) Group is a place where you can join conversations, share experiences and learn about the epilepsy syndromes that are part of REN.

Community Action Network

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The goal of the Community Action Network (CAN) is to establish volunteer groups across the country in order to enable and advance the mission of the Epilepsy Foundation. Successful groups will create more epilepsy awareness and enhance and grow the support within the community the Foundation can provide. The purpose of this online group is to network with other groups from across the country, share experiences, and ask questions.

Bereavement Support

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177 contributors discussing the topic sudep.

Welcome to the Bereavement Support Group. The Epilepsy Foundation SUDEP Institute would like to express our deepest condolences to you and your family. We understand losing a loved one to epilepsy is confusing and tragic and we want to help.

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