Particpate in the EL-PFDD on Dravet Syndrome
Externally-Led Patient Focused Drug Development (EL-PFDD) Meeting on Dravet Syndrome
EL-PFDD meetings bring together patients and caregivers, US Food and Drug Administration (FDA) representatives, pharmaceutical companies, and doctors who are experts in the particular disease. DSF will be hosting a virtual EL-PFDD on Dravet syndrome on February 3, 2022 from 10am-3pm EST. The goal of the meeting is to hear from patient caregivers about what it is like to live with Dravet syndrome and the impact on the patient and family, so that the FDA and pharmaceutical companies can understand the patient experience. This information can help the FDA make informed decisions on approvals of potential medicines for Dravet syndrome, and the information collected helps pharmaceutical companies to design clinical trials that are meaningful for patients. Since it will be a virtual event, you will have the opportunity to share your experiences from wherever you are.
After the meeting, we will produce a Voice of the Patient report which is a detailed summary of the patient testimony presented at the meeting. This report will serve a critical function in communicating to both FDA review staff and industry the improvements that patients want and hope to see in their daily lives. You can learn more about EL-PFDD meetings and why your participation in this particular meeting is so important here, and then be sure to register for the meeting.