In 2018, the LGS Foundation conducted an in-depth survey of it's 4,500 member patient and family community to better understand the frequency of symptoms seen in LGS, aspects of seizure treatment, and patient priorities.
Here's What We Learned
With gratitude for the following individuals who have enhanced the Delve PFDD Meeting:
Kim McCleary of the Kith Collective for support with the strategic, communications, and moderation of our PFDD meeting (where the above survey was released).
Julie Rathjens of Hello Brand for the design of the DELVE logo and production of other creative materials including the above survey.
Our many non-profit organization friends and collaborators in the Rare and Catastrophic Seizure Collaborative (RCSC) who serve patients and families living with DEE's.
Families who participated in the 2018 "LGS Characteristics and Major Concerns Survey"