SAN DIEGO, Feb. 24, 2026 /PRNewswire/ — The Lennox-Gastaut Syndrome (LGS) Foundation, in partnership with NORD®, has launched the LGS-CORE Study. The LGS-CORE Study creates a platform for patients around the world to strengthen their voices and share information about Lennox-Gastaut Syndrome, a disease that causes uncontrolled seizures of multiple types, often severe, that lead to developmental delay and lifelong intellectual and physical disabilities. Patients, caregivers, and families are further impacted by issues with sleep, behavior, movement, feeding, and communications. Lennox-Gastaut Syndrome currently has no cure.
Designed with the input of scientists and patient-families, this global resource will provide data for researchers to use to advance drug development and treatment options to help improve Lennox-Gastaut Syndrome patient care.
“The LGS-CORE Study will provide a complete picture of each patient’s experience with Lennox-Gastaut Syndrome,” said LGS Foundation Executive Director Dr. Tracy Dixon-Salazar who has an adult daughter with LGS. “We are launching this initiative to help fill in the missing information researchers and medical experts need to advance research and one day, find a cure.”
For more information, visit LGS-CORE Study.
About the Lennox-Gastaut Syndrome (LGS) Foundation
The Lennox-Gastaut Syndrome (LGS) Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS. It educates the public about LGS, supports families living with the condition, and drives cutting-edge research to find the cures. Visit LGSFoundation.org. About National Organization for Rare Disorders, Inc. (NORD®)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org. SOURCE Lennox-Gastaut Syndrome (LGS) Foundation
The Lennox-Gastaut Syndrome (LGS) Foundation is a nonprofit organization dedicated to improving the lives of individuals impacted by LGS. It educates the public about LGS, supports families living with the condition, and drives cutting-edge research to find the cures. Visit LGSFoundation.org. About National Organization for Rare Disorders, Inc. (NORD®)
The National Organization for Rare Disorders (NORD) is the leading independent advocacy organization representing all patients and families affected by rare diseases in the United States. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. Since then, the organization has led the way in voicing the needs of the rare disease community, driving supportive policies, furthering education, advancing medical research, and providing patient and family services for those who need them most. Together with over 300 disease-specific member organizations, more than 17,000 Rare Action Network advocates across all 50 states, and national and global partners, NORD delivers on its mission to improve the lives of those impacted by rare diseases. Visit rarediseases.org. SOURCE Lennox-Gastaut Syndrome (LGS) Foundation
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