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About REN

Rare Epilepsy Network (REN) was born in 2013 with ten rare epilepsy organizations fueled by a Patient-Centered Outcomes Research Institute (PCORI) grant, managed by the Epilepsy Foundation (EF), and singularly focused on a project to build a patient-centered registry.


By 2019, REN had grown to 32 organizations, launched a first-of-its-kind rare epilepsy registry, including 41 diseases, and on-boarded 1,500 patients. When the PCORI grant came to a close in Spring 2019, REN members determined there was value in continuing the network, expanding from a single focused project to multiple projects, and improving transparency about REN’s mission, composition, and terms of engagement. As a result, a small transition work group convened to envision the future of REN.


In early 2020, REN began anew and is growing with speed. REN is a volunteer network that welcomes all rare epilepsy organizations to come together around research efforts where our collective efforts will improve the lives lived of our individual constituents. REN includes rare epilepsy organizations and broad epilepsy stakeholders committed to this common mission. Meet our Members and Partners here.

Patient-Focused: Improving patient

outcomes defined by patients and/or caregivers.

Our Mission

Our Goals

  1. Promote and enable successful patient-centered outcomes research

  2. Enable successful clinical trials in the rare epilepsies

  3. Increase representation of the rare epilepsies in funding, research, advocacy and drug development, across a wide range of public and private health organizations

Our Values




Urgency: Improving patient-defined outcomes

through quality science with urgency.   

Collaborative: Enabling communication, coordination and collaboration across stakeholders with shared goals.   


Our Mission

The mission of Rare Epilepsy Network (REN) is to work with urgency to collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy.

Our Vision

The vision of REN is to support, grow and maintain a network of rare epilepsy groups formed around a living overarching structure tasked with defining REN projects, in which REN groups are able to choose to participate.

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