For Healthcare Professionals
The collaborative efforts of our expert healthcare professionals, neurologists, epileptologists, neurosurgeons, and neuroscientists have significantly accelerated and enhanced the accuracy of diagnoses, enabling us to provide families with timely access to a comprehensive range of potential treatment options. Each child has the opportunity to receive personalized care by healthcare professionals tailored to their specific needs, ultimately improving their quality of life and long-term outcomes.
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 resulting in early mortality.
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.
- Get the Facts – Download our LGS Fact Sheet
- Learn more – LGS Natural History Study
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)
If you would like to order complimentary patient educational materials for your office, please get in touch with us at info@LGSFoundation.org
Help us change the future by using LGS ICD codes today.
Having the appropriate coding in the person with LGS's medical record can:
- Make it easier to secure coverage for indicated medications and medical testing required for recognized co-morbidities of LGS
- Allow researchers to track how many people have LGS
Be sure to use these codes with your patients who have LGS:
Join our directory of physicians for Lennox-Gastaut Syndrome.
Are you a patient-family and want to refer a doctor to other LGS families?
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
Clinical trials & registries available for your patients.
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.
The LGS Foundation brings together patient families and researchers to drive LGS research to new heights.
With our LGS Collaborative Research Network, we push the conversation about research beyond only treating the symptom of seizures but also finding treatments that target the whole syndrome.
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.
Updated 09/12/24 (KK)