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Coalition of professional societies, patient advocacy organizations, and governmental agencies working to improve the lives of individuals living with epilepsy.


A collaborative of 50+ organizations dedicated to raising awareness for Infantile Spasms.

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Resources for Families with Developmental & Epileptic Encephalopathies (DEEs).

List-serve for researchers, clinicians, advocates and industry with an interest in known genetic conditions which are associated with autism.

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Consortium for Outcome Measures and Biomarkers for Neurodevelopmental Disorders.


Informal list-serve for leaders of organizations to share resources and advice.

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A patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  

Empower patients, build communities & drive forward momentum for rare disease globally.

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Engages individuals, families and communities to transform health.


We do not speak for patients. We provide the training, education, resources and opportunities to make patient voices heard. 

Rare Epilepsy Network

Rare epilepsies collaborating. 

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