Advocacy and Policy

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

What is a Request for Information?


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


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