For Healthcare Professionals

It is with the help of our dedicated neurologists, epileptologists, neurosurgeons, and neuroscientists that our children have been diagnosed quicker and more efficiently to provide them with access to information on potential treatment options.

Could it be Lennox-Gastaut Syndrome (LGS)?

LGS is one of the Developmental and Epileptic Encephalopathies (DEEs) and frequently evolves from early-life epilepsy (a brain disorder characterized by seizures). The abnormal brain waves seen in LGS are a sign that typical brain development has been disrupted and once the abnormal LGS brain network forms in a child, it is extremely difficult to get seizure control and to learn. Over time, LGS becomes neurodegenerative and most die before their time.

Know the 4 Core Features of LGS

LGS Evolves Over Time in Children

Nobody is born with LGS; it develops over time from childhood seizures that remain uncontrolled by treatments and from brain injury. In LGS, seizures usually begin in the pre-school years, and LGS usually emerges between 3 to 5 years of age. LGS can, however, start later in childhood.

If you would like to order a box of complimentary patient educational materials for your office, please get in touch with us at

ICD-10 Codes for Lennox-Gastaut Syndrome

Having the appropriate coding in a patient’s medical record may also make it easier to secure coverage for indicated medications and medical testing required for recognized co-morbidities of the disease. And, without a specific ICD-10 code, it is difficult to track how many people have the disease and where they are located. If patients are not being properly coded, we might not be accurately tracking all of the characteristics of the disease, as well as assuring that patients are receiving appropriate care.

  • G40.81 Lennox-Gastaut Syndrome
    • G40.811  …… not intractable, with status epilepticus
    • G40.812 …… not intractable, without status epilepticus
    • G40.813 …… intractable, with status epilepticus
    • G40.814 …… intractable, without status epilepticus

Professional Resources

Clinical trials & registries available for your patients.
Learn More About Clinical Trials for LGS 
Funding for research directly related to Lennox-Gastaut Syndrome.
Learn About Cure LGS 365 Research Grants 
Join a directory of physicians for Lennox-Gastaut Syndrome.
Submit a Request to Join 
  • Get information about LGS
  • Learn about support for families
  • Learn how to provide the best care
Join the LGS Professionals Connect Group 
Connect patients and caregivers with the LGS Foundation's Caregiver Support Community. (This online Caregiver Support Community is for family members and caregivers of individuals with LGS only)
Learn More About Our Support Community 

To qualify as an LGS Comprehensive Care Center, the center is expected to:

  • Offer a multidisciplinary approach for the treatment of Lennox-Gastaut Syndrome
  • Have a high concentration of expertise and related resources centered on LGS
  • Demonstrate a strong knowledge base and familiarity with LGS
  • Commit to furthering clinical knowledge of LGS through collaboration with others, including the LGS Foundation
  • Have involvement in studies and/or clinical trials for Lennox-Gastaut Syndrome and are knowledgeable about new treatments and cutting-edge research.
Medical professionals interested in having their center added may apply here: APPLY NOW
The Researcher Travel Program is intended to assist with travel expenses for rare disease researchers and professional students with an interest in the rare disease field. It is our hope that this program provides opportunities for these individuals to be able to connect in person with the rare disease community, to foster collaboration, and communication.
Learn more about the travel program and qualifications
The PERC LGS Special Interest Group is leveraging national expertise and harmonized multi-center clinical data to define the etiological landscape, natural history, current clinical practices, and outcomes for LGS. We aim to develop an improved evidence base for prevention strategies, best-practice treatment and improved outcomes for individuals with LGS, and to facilitate prospective studies and clinical trials.

To join a Special Interest Group (SIG), please contact PERC’s Executive Director, Jane Zeender, at In order to join PERC, your institution must be a member, which currently involves the signing of a Memo of Understanding and a commitment from each member institution to actively participate in one or more SIGs. PERC’s Special Interest Groups typically meet via Zoom on a regular basis, in addition to meeting in person at national epilepsy conferences.