Patient-Focused Drug Development (PFDD) Meeting
The LGS Foundation was proud to host the
DELVE Meeting on Developmental and Epileptic Encephalopathies (DEEs) & Lennox-Gastaut Syndrome (LGS)
An Externally-Led Patient-focused drug development (PFDD) meeting on DEEs & LGS
On November 1, 2019, the LGS Foundation convened the first patient-focused drug development meeting (PFDD) for the DEEs and LGS in College Park, Maryland.
Over 100 people ranging from patients, caregivers, FDA representatives, pharmaceutical companies, device manufacturers, and other epilepsy professionals attended to listen to the voice of the patient family about what it’s like to live with LGS and other DEEs.
In preparation for this meeting, the LGS Foundation surveyed the LGS patient family community and asked about the key characteristics seen in LGS patients and the major concerns caregivers have.
Over 413 caregivers responded to the survey representing LGS families from 17 different countries!
Thank you to all those who attended in person and listened in during our live stream.
WATCH THE OPENING VIDEO ON LIVING WITH LGS
read the results of our LGS CHARACTERISTICS & MAJOR CONCERNS SURVEY
Read the Meeting Report: Voice of the Patient Family for DEEs & LGS *COMING SOON*
What is a PFDD Meeting?
PFDD meetings are part of an initiative that was launched by the U.S. Food and Drug Administration (FDA) in 2012. These meetings are designed to help the FDA, researchers, and companies developing medicines and medical devices better understand what patients and families affected by specific disorders and diseases experience. The meeting gives individuals and families an opportunity to voice their perspectives, experiences, needs, and priorities regarding current and future treatments.
Patient voices have historically been disregarded. In PFDD meetings, however, people with lived experience as patients and caregivers have the opportunity to share the daily impact of the disease. At our meeting, caregivers will highlight the unmet needs of their children and will describe the shortcomings and advantages of current therapies. The success of PFDD meetings is often determined by the ability to engage broad participation from communities of patients and caregivers, for rare and prevalent conditions alike.
Watch Our Caregiver to Caregiver Webinar on Preparing for the DEE & LGS PFDD Meeting →
More Information About PFDD Meetings →
Thank You To Our Sponsors for supporting this crucial meeting to share the patient experience
Updated May 2, 2022