Members & Partners

The Rare Epilepsy Network is comprised of 150 members and partners (and growing). It is overseen by a Coordinating Committee (CC) comprised of volunteers from the Member Network. It is administered by a Director. To join, click here.

REN members represent a rare epilepsy disorder constituency; they include Patient Advocacy Groups (PAGs) irrespective of legal status (501c3) and may include support and Facebook groups; and may include groups that are not US-based, although some REN activities focus on the United States funding and policies.

*Organizations based outside of the United States. Many organizations serve global constituencies.

REN Partners

REN partners include organizations with specific expertise to advise, consult, and serve the Network; partners may: include consortia, academia, coalitions, researchers, and professional associations; be engaged on a project-by-project basis; and serve as non-voting members.

American Epilepsy Society (AES)

Alliance for Genetic Etiologies in Neurodevelopmental Disorders and Autism (AGENDA)

Association of University Centers on Disabilities (AUCD) (NEW 2024)

Child Neurology Foundation (CNF)

COMBINED Brain

Developmental & Epileptic Encephalopathies (DEE-P Connections)

Epilepsy Alliance America (NEW 2024)

Epilepsies Action Network (EAN)

Epilepsy Leadership Council (ELC)

Epilepsy Learning Healthcare System (ELHS)

Epilepsy Reach (NEW 2024)

National Association of Epilepsy Centers (NAEC)