Advocacy and Policy

Respond to RFI's to promote the unique perspective of Rare epilepsies.

What is a Request for Information?

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Support for the Epilepsy Foundation

REN supports the Epilepsy Foundation’s application for the funding announcement Improving Epilepsy Education, Systems of Care, and Health Outcomes through National and Community Partnerships

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A Request to the U.S. Senate Committee of Appropriations

REN joins 51 other organizations in a request for U.S. Senate to appropriate $3.75 billion to the NCCDPHP to support its mission to help people and communities prevent chronic disease.

RFI: Joni Rutter

Request for Information: Facilitating the Early Diagnosis and Equitable Delivery of Gene Targeted Therapies to Individuals with Rare Disease