Authors :
Presenting Author: Ilene Miller, JD, LLM – Rare Epilepsy Network
Kathleen M. Farrell, MB BCh BAO – Epilepsy Foundation
Jeffrey Buchhalter, MD, PhD – Epilepsy Foundation
Sasha Alick-Lindstrom, MD, MPH – UT Southwestern
Brandy Fureman, PhD – Epilepsy Foundation of America
Rationale:
Although the epilepsies are the fourth most common neurological disorder, many individual causes are rare, often genetic and frequently include Developmental and Epileptic Encephalopathies (DEEs). Advances in genetic and other testing have improved and increased diagnoses but these complex, catastrophic, and even deadly conditions require multidisciplinary care. With surges in disorders and diagnoses, even experienced clinicians struggle to keep up – especially in resource limited communities.
To close the gaps, Epilepsy Foundation (EF) and Rare Epilepsy Network (REN) offered Extension for Community Healthcare Outcomes (ECHO) telementoring programs in 2023 and 2025, focused on rare epilepsies and their comorbidities for neurologists and other professionals.
Methods:
Caregiver and professional landscaping surveys identified diagnostic and care barriers.
For both, multidisciplinary faculty were trained in the ECHO model delivering brief lectures and case-based discussions. 2023 series covered genetic, structural and metabolic diagnosis and care; comorbidities; and transitions; 2025 focused on genetic epilepsies.
Participant recruitment leveraged partner outreach via social media, emails, and presentations.
Evaluations followed registration, sessions, and the program. CME was offered for both; expanded in 2025.
Results:
Landscaping shaped audience targets: neurologists, nurses, and pediatricians plus Genetic Counselors in 2025. Gaps identified: medication and comorbidity management; access to genetic testing and specialists; and caregiver resources.
Both recruited diverse specialists from more than 25 states. See Image 1.
Evaluations showed increases in knowledge and confidence to diagnose and treat these epilepsies. See Image 2.
Conclusions:
ECHO increases knowledge and confidence among providers - even among experts at Level 4 centers, which was unexpected.
Demand for this programming is high - topics rarely covered in medical training and difficult for experienced practitioners to access.
ECHO fosters cross-institution collaboration, creating a multiplier effect that improves community care and supports specialist referrals.
Challenges with case procurement and participant engagement will be redressed by aligning cases with didactics and using breakouts. Improved recruitment in 2025 reached more underserved communities.
CME and thought leader access were key drivers.
Strong future program interest on genetic testing and counseling, precision therapies, EEG and surgical options. 2025 didactics were added to EF’s Learning Management System (LMS) for on demand access. New Epilepsies ECHO Hub centralizes content across the epilepsies.
Funding:
2023 Organizers: American Academy of Pediatrics, Epilepsy Foundation & Rare Epilepsy Network; Support: Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services under cooperative agreement # NU58DP006965. Contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement. 2025 Organizers: EF & REN; Supporters: Biocodex, LivaNova, SK Life Science & UCB.