Collaborators

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

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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.

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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.

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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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