An exciting initiative by the Dravet Syndrome Foundation to share patient perspectives with the FDA on the unmeet needs of those living with Dravet syndrome.
Anyone who lives with or is interested in Dravet syndrome – parents, caregivers, extended family members, friends, FDA staff, and industry members – is encouraged to attend, to share and learn from the patient experience.
Feb 3, 2022 | 10:00am – 3:00pm Eastern | Livestream
This will be a virtual meeting. We will email you the link to join the virtual meeting in advance of the meeting date. Questions? Email DSF
Voice of the Patient
After the meeting, a Voice of the Patient report will be developed based on the content of the meeting and sent to the FDA and housed on the DSF website. This will be a reference for future decisions about potential treatments for Dravet syndrome.
Plan to join us for a community webinar that will explain and review what to expect at the Dravet syndrome EL-PDD will be held on January 7, 2022 from 2:00 – 3:00pm Eastern. Watch this page a few days before the webinar for the link.
What is an EL-PFDD Meeting?
Externally led patient-focused drug development (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. For this meeting on Dravet syndrome, the goal is to hear from patient caregivers what it’s 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. You can read our recent blog post for more details on EL-PFDD meetings and why your participation in this particular EL-PFDD is so important.
About the EL-PFDD meeting on Dravet syndrome
The meeting will be a VIRTUAL MEETING on Thursday, February 3, 2022 from 10:00 AM to about 3:00 PM
This meeting will be broadcasted in a newscast format with patient testimonies and remote audience participation
The meeting agenda includes caregiver testimonials, patient-family panels, live polling, and audience discussion across two sessions that focus on the symptoms and daily impact of living with Dravet syndrome, as well as perspectives on current and future approaches to treatment.
Who can participate in the EL-PFDD meeting?
Anyone impacted by Dravet syndrome and those working diligently to improve the outcomes for those diagnosed with this rare developmental epileptic encephalopathy are encouraged to participate and strengthen our sharing with the FDA. It is vital that all of the following stakeholders participate:
International Dravet syndrome advocacy organizations