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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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An organization that develops transformative therapies using platform technologies that can be deployed across multiple rare diseases. 

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The Orphan Disease Center's JumpStart program serves to establish and progress research agendas in rare diseases.

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

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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. 

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The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities.


Spread awareness of what a Seizure Action Plan (SAP) is; the importance of a SAP in the health management of those with epilepsy; and resources to develop an individualized SAP.


Improving Understanding of and Working to Prevent Epilepsy-related Mortality.






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