Externally-Led PFDD Meeting on the Developmental and Epileptic encephalopathies (DEEs), including LGS
On November 1, 2019, the LGS Foundation convened the first patient-focused drug development meeting (PFDD) for the DEEs (developmental and epileptic encephalopathies) including Lennox-Gastaut Syndrome in College Park. 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 (caregiver) about what it’s like to live with LGS and other DEEs. Thank you to all those who attended in person and listened during our live stream.
Many thanks to our sponsors who helped to support this important event!
Frequently Asked Questions
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.
WHAT IS THE DEE / LGS PFDD MEETING?
On November 1, the LGS Foundation convened the first PFDD for Lennox-Gastaut Syndrome and other DEEs (Developmental Epileptic Encephalopathies). This gave LGS families the opportunity to make their voice heard by the FDA and to speak about the challenges that patients, caregivers, and family members face. Over 100 stakeholders attended the meeting including families, patients, industry representatives, physicians, FDA staff, and other epilepsy professionals. The LGS community was joined by our friends from other advocacy organizations whose diseases overlap with LGS or who also have a developmental epileptic encephalopathy (DEE).