Voices of LGS and Natural History
The LGS Foundation is harnessing the power of the patient family community to ensure that research, care, support services, education, and awareness of LGS are relevant for those living with LGS and their loved ones.
Learn About LGS from those who know it best,
the Patient family community
Learn about patient-caregiver priorities:
In 2018, the LGS Foundation conducted an in-depth survey of its 4,500-member patient and family community to better understand the frequency of symptoms seen in LGS, aspects of seizure treatment, and patient priorities.
Read OUR LGS CAREGIVERS CONCERNS SURVEY
Listen to caregiver testimony:
On November 1, 2019, the LGS Foundation convened the first-ever Externally-Led Patient-Focused Drug Development (PFDD) meeting for the DEEs & LGS.
In the LGS & DEE PFDD meeting, researchers and drug development stakeholders met with families and caregivers of those affected by LGS. Their goal was to learn which avenues of research would be most impactful to the daily lives of the LGS community.
Watch OUR PATIENT FOCUSED DRUG DEVELOPMENT MEETING
Understand The Natural History of LGS:
In 2019, the LGS Foundation partnered with Dr. Anne Berg and asked caregivers to share their daily struggles and what it is like living with Lennox-Gastaut Syndrome. The goal is for this to help parents of newly diagnosed children understand what to expect, improve treatment and care from epileptologists and other providers, and support the development of personalized clinical trials in the future.
READ DR. BERG’S PAPER ON THE NATURAL HISTORY OF LGS
Updated June 1, 2022
