Epilepsies ECHO HUB

Register for the new program before December 15.

Expert knowledge from Epilepsy Specialists

The Epilepsies ECHO HUB brings the best care to local communities.

The Epilepsies ECHO Hub connects specialist teams from nationwide Level Four Epilepsy Centers with local care teams to benefit and empower persons living with epilepsies and their families. Epilepsies ECHO HUB is part of the Project ECHO® (Extension for Community Healthcare Outcomes) International network.

NEW Programs Launching

A new Rare Epilepsy ECHO targeting healthcare providers is launching in January 2026. Registration is open until December 15.

Take the on-demand course, The (Not So Rare) Epilepsies Series, to learn about managing rare epilepsies and DEEs.

Care for your patients with the support of nationally recognized experts.

This virtual learning network includes epileptologists, neurologists, genetic counselors, developmental pediatricians, child psychologists, and resource specialists. Care for your patients in your own practice with the support of nationally recognized epilepsy experts. Learn best practices for evidence-based care.

Earn Free Continuing Medical Education (CME) too.

“I feel more knowledgeable about genetic epilepsies and how my practice can consider genetic testing for children.” – (Not So Rare) Epilepsies ECHO Participant

Epilepsies ECHO Hub Programs

Since 2019, Epilepsy Foundation has successfully led, planned and collaborated on multiple epilepsy related ECHOs nationwide to achieve our goals of reducing seizures and side effects, and improving quality of life for people with epilepsy. Over 1,400 participants have already joined one of our epilepsy ECHOs.

Join programs launching, access programs on demand, or learn about past programs. To learn more, contact Dr. Kathleen Farrell, VP Public Health and Outcomes, echo@efa.org with any questions.

The (Not so Rare) Epilepsies ECHO

Integrating Genetic Insights Into Clinical Care (January - March 2026)

Curriculum	Faculty
Spotting the Clues & Knowing the Tools	Co-Chairs: Heather Mefford, MD, PhD \| St. Jude (Memphis, TN) Pavel Klein, MD \| Mid-Atlantic Sleep & Epilepsy Center (Bethesda, MD)
From Report to Reality	Beth Sheidley, MS, CGC \| Boston Children’s (Boston, MA) Angel Hernandez Mulero, MD \| John’s Hopkins All Children’s (St. Petersburg, FL)
Genetic Epilepsies – in Infancy (Birth to 2 Yrs)	Amy Goldstein, MD \| CHOP (Philadelphia, PA) Lily Radanovich, MS, CGC \| Valley Children’s Healthcare (Madera, CA)
Genetic Epilepsies – in Early Childhood (3 to 10 Yrs)	Dave Clarke, MBBS, ABPN, ABCN \| Dell Children’s @ UT Austin (Austin, TX) John Schreiber, MD \| Children’s National (Washington, DC)
Genetic Epilepsies – Adolescents & Adults (11+)	Marissa Kellogg, MD, MPH, FAES \| OHSU Comprehensive Epilepsy Center (Portland, OR) Colin Ellis, MD \| Penn Epilepsy Center (Philadelphia, PA)
Case Rodeo*	Invitation to participants to present cases for discussion and feedback.
Discussants	Geraldine Bliss, Caregiver, Advocate \| CureSHANK, Start Genetic (College Station, TX) Toni Kavanagh, RN, CNRN, MSHA, MBA \| Mount Sinai Hospital Systems (New York, NY)

Partners

Supporters

Bridging Genetic Diagnosis with Complex Care (January – April 2025)

Now Available on Demand

Curriculum	Faculty
Identify, Treat, & Manage Rare & Genetic Epilepsies	Co-Chairs: Scott Demarest, MD (Colorado Children’s), Senyene Hunter, MD, PhD (Univ NC)
2. Genetic Testing: Which Test When?	Beth Sheidley, MS, CGC Genetic Counselor (Boston Children’s), John Schreiber, MD (Children’s National)
3. Genetic Testing: Interpretation & Counseling plus Treatment & Management	Heather Mefford, MD (St. Jude), Emily Bonkowski, ScM, CGC Genetic Counselor (St. Jude)
4. Identify and Collaboratively Manage Non Seizure Comorbidities for Rare & Genetic Epilepsies	Scott Perry, MD (Cook Children’s) TBD, Kourtney Santucci (Colorado Children’s)
5. Best education & communication practices for for Rare & Genetic Epilepsies regarding SUDEP/Mortality, rescue meds, seizure safety, Seizure First Aid, Seizure Action Plans	Christal Delegrammatikas (Malan Syndrome), Laura Kirkpatrick, MD (Univ Pitt)
6. Transitions from Peds to Adult for Rare & Genetic Epilepsies	Jaime Dawn E. Twanow, MD (Nationwide Children’s), Elizabeth Felton, MD, PhD (Univ WI)
DISCUSSANTS	Research: Dennis Lal, PhD (UT Houston), DEI: Camilo Gutierrez, MD (Univ Maryland), Rural: Dave Clarke, MD (UT Austin)

96 Unique Participants | 25 States & 5 Countries | 83% Identified Actions learned they will apply to work

Partners	Supporters
Image	Biocodex with LivaNova, Neurelis, SK Life & UCB

Hard to Diagnose & Hard to Treat (March – June 2023)

Curriculum	Faculty
1. Rare Epilepsies Overview	Eric Marsh, MD, PhD & Vishnu Cuddapah, MD, PhD (CHOP)
2. Evaluation of Rare Epilepsies	Annapurna Poduri, MD, MPH & Kimberly Wiltrout, MD (Boston Children’s)
3. Genetic Channelopathies	Senyene Hunter, MD, PhD (Univ. North Carolina)
4. Genetic Epilepsy – Other Mechanisms	Scott Demarest, MD, MSCS (Colorado Children’s)
5. Structural/ Genetic vs. Non-Genetic	Nathan Cohen, MD (Children’s National) & Brenda Porter, MD, PhD (Stanford)
6. Metabolic Epilepsies	Xilma Ortiz-Gonzalez, MD, PhD (CHOP)
7. Non-seizure Comorbidities	Elaine Wirrell, MD (Mayo)
8. Transitions: Pediatrics to Adults	Danielle Andrade, MD, MSc, FRCSC (Univ. Toronto)
9. Communication and Resources	Yssa DeWoody, PhD (Ring14 USA)
Discussants:	Dave Clarke, MD (UT Austin) , Robin Blitz, MD (Phoenix, Az), Emily Bonkowski, ScM, CGC (St. Jude), Lenora Lewald, MD (Nationwide)

106 Unique Participants | 26 States | 70% reported positive practice changes

Partners

Supporters

This project was supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) under cooperative agreement number NU58DP006965. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government.

ECHO Epilepsy & Neurology

Years:
2024 Coming soon
2023
2022
2021

Programs Partners:
University of Cincinnati
Epilepsy Foundation

ECHO Epilepsy Self-Management Training for Community Health Workers

Years:
2021 (available on demand) (CME available)

Programs Partners:
American Academy of Pediatrics Project ECHO
HRSA grant #
UCB (on demand)

Managing Students with Seizures ECHO

Years:
2021
2020
2019

Programs Partners:
School Nurses
Epilepsy Foundation

Publications:

Supporters

Epilepsies ECHO HUB and individual programs rely on generous support from government, academic, and industry supporters. The HUB is made possible by our sponsors.

Resources

Epilepsy Centers

Epilepsy centers provide you with a team of specialists to help you diagnose your epilepsy and explore treatment options.

Epilepsy Medication

Find in-depth information on anti-seizure medications so you know what to ask your doctor.

Epilepsy and Seizures Helpline

Call our Epilepsy and Seizures Helpline and talk with an epilepsy information specialist or submit a question online.

Tools & Resources

Get information, tips, and more to help you manage your epilepsy.

Share the Love