ELHS Community

People Living with Epilepsy and Families

People living with epilepsy and their families are a critical part of the ELHS. The ELHS community needs you on our team. To help the ELHS get started, a Community Core is engaging people with epilepsy and families from across the epilepsy community.

As the ELHS gets started at individual epilepsy centers, there will be more volunteer opportunities to get involved at the local level. There are many ways to participate — sharing your experiences, needs, hopes, successes, and challenges makes sure that your voice helps determine priorities for the Learning Network. Most importantly, participating in the ELHS with your health care team will help us learn directly from you.

Benefits of participating in the Learning Network include:

  • Developing new leadership skills
  • Making a difference for people living with epilepsy in your community
  • Engaging with your local epilepsy program
  • Improving connections with your medical providers and their peers
  • Connecting with other individuals living with epilepsy and their families
  • Participating in and leading sessions designed specifically for people living with epilepsy

Epilepsy Healthcare Centers and Providers

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Epilepsy healthcare centers and medical providers across the country are vital partners in the mission of the ELHS Network. The ELHS will continue to expand and improve its efforts along with clinical leaders who have dedicated their careers to improving the quality of life for people living with epilepsy and their families.

The ELHS is partnering with the National Association of Epilepsy Centers (NAEC) to provide opportunities for healthcare providers to participate in the ELHS.

Learn more about the potential benefits to healthcare centers participating in the ELHS.

Epilepsy Foundation Network of Local Offices

The Epilepsy Foundation network is composed of nearly 50 local offices aligned with a shared purpose of improving quality of life for people with epilepsy. The network shares a spirit of collaboration and commitment to each other and to the millions of individuals and families the Epilepsy Foundation is privileged to serve.

Local Epilepsy Foundation teams work to:

  • Provide information and referral assistance
  • Maintain individual and family support services
  • Serve as advocates for the rights of those with epilepsy
  • Offer community-based programs to the spectrum of individuals impacted by epilepsy
  • Provide education to employers, emergency first-responders, school nurses, and other allied health professionals

Epilepsy Foundation local offices are an integral part of ELHS. In addition to building strong and well-supported epilepsy communities, local office teams help to build bridges for individuals and families to get to the epilepsy care they need. Local Epilepsy Foundation teams are linked with epilepsy centers in their state. A bidirectional referral system from epilepsy centers to Epilepsy Foundation offices, and from Epilepsy Foundation offices to epilepsy centers, helps to provide a more comprehensive system of support for any individual or family facing the challenges of epilepsy.

Together people living with epilepsy, local Epilepsy Foundation teams, and providers at epilepsy centers can help to ensure anyone affected by epilepsy is receiving the best medical advice for managing their epilepsy and the best support and services when they leave the clinic and head home.

Local ELHS Partners
ELHS network map

Reach Out to Local ELHS Offices to Learn More

ELHS Strives to Improve Quality of Life and to reduce and eliminate seizures for all people with epilepsy


The Epilepsy Foundation is proud to work with the following partners in this effort.

The Centers for Disease Control and Prevention (CDC)

This network is supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $240,000. 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.

James M. Anderson Center for Health Systems Excellence (Cincinnati Children’s)

The James M. Anderson Center for Health Systems Excellence was established in 2010 to dramatically expand work being done in transformational improvement. Cincinnati Children’s is committed to providing the best outcomes, the safest care for children and families, and applying all that is learned through research. Within Cincinnati Children’s, the center promotes, facilitates and supports a wide range of improvement initiatives. At the same time, Cincinnati Children’s hopes to be an inspirational model – or exemplar – for others who are beginning or are well along the way on the same journey.

National Association of Epilepsy Centers

The National Association of Epilepsy Centers (NAEC) is a non-profit association with a membership of more than 240 specialized epilepsy centers in the United States. NAEC was founded in 1987 by physicians committed to setting a national agenda for quality epilepsy care. NAEC published its first iteration of its Guidelines for Essential Services, Personnel, and Facilities in Specialized Epilepsy Centers in 1990. The Association continues its work to develop standards of care and promote their adoption by epilepsy centers through its accreditation program. NAEC pursues an active agenda, educating public and private insurers, policymakers, and government officials about the complexities of and need for patient access to specialized epilepsy services.

To connect with ELHS and learn more about our partners, email ELHS@efa.org.

Patient-Centered Outcomes Research Institute (PCORI)

ELHS is one of four PCORI Learning Networks, which received coaching support from the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital Medical Center.

QI Science Leadership Consortium

The objective of this Consortium is to discuss the landscape of Quality Improvement (QI) Science efforts in epilepsy and efforts in leveraging data to establish and evaluate healthcare utilization, health economics and quality outcomes measures. The Consortium has the ability to inform areas of value in ELHS work, and to catalyze ELHS work based on priority areas.

The Consortium convenes on a semi-annual basis at the QI Roundtable to present the work done and future work planned to date, to share where the network believes value lies, and to gather input from the supporting stakeholders on where they see priorities not yet identified or resources yet untapped.

If you are interested in participating in the QI Science Leadership Consortium, please contact Corporate Philanthropy Officer Nicole Murray, nmurray@efa.org.

Rare Epilepsy Network

The Rare Epilepsy Network, or REN for short, is a collaboration between the Epilepsy Foundation, RTI International, Columbia University and many different organizations that represent patients with a rare syndrome or disorder that is associated with epilepsy or seizures.


The ELHS model emphasizes that research is done in collaboration with, not for or about, people living with epilepsy and their families. The voices of people are at the core of EHLS.

Across the ELHS network, individuals with epilepsy, parents, caregivers, clinicians and researchers will work together to identify research questions, design and carry out studies to answer important questions about epilepsy, and to implement what they've learned.

Consistent with the mission of the EHLS, research will focus on improving the health and care of people with epilepsy. With this as the driving force behind the work of EHLS, research can be subdivided into four interdependent areas of focus:

  • Quality improvement (QI)
  • Comparative effectiveness/Epidemiology
  • Clinical trials
  • Laboratory research

To connect with ELHS and learn more, email ELHS@efa.org.

Authored By: 
Elaine Kiriakopoulos MD, MSc
Authored Date: 
Reviewed By: 
Kathleen Farrell MB, BCh, BAO
Alison Kukla MPH
Monday, February 8, 2021