EL-PFDD Meeting
Helping regulators and drug developers understand the unique needs of the SCN2A community
Externally-led Patient-Focused Drug Development (EL-PFDD) Meetings
We are pleased to announce the FamilieSCN2A Foundation will host an Externally-led Patient-Focused Drug Development (EL-PFDD) meeting on October 23, 2026. The goal of this public meeting is to share the critical patient voice for future drug development efforts and key stakeholders, including the US Food and Drug Administration (FDA). This meeting is a key part of the Foundation's strategy to advance patient-centered drug development. The EL-PFDD will be held in-person in the Washington, DC area and will be live-streamed globally. All families affected by SCN2A-related disorders from around the world will be given opportunities to participate and share their experiences.
Join us in person* or virtually.
The meeting will be livestreamed with opportunities for virtual participation throughout.
Friday, October 23, 2026
10:00 am - 3:00 pm ET
*In-person seating is limited. Please reserve an in-person spot only if you are confident you will be able to attend in Washington, D.C.
In the event of a government shutdown or other event preventing FDA from attending, the backup date for this meeting is March 1, 2027
Share Your Comments for the
Voice of the Patient Report
Written comments are now OPEN!
We encourage everyone in the SCN2A community to submit a comment, whether you are attending the October 23 meeting in person, joining virtually, or unable to attend.
Your written comments will be included in the final SCN2A Voice of the Patient Report and carry the same weight as comments shared during the meeting.
The comment period is open September 23 – November 22, 2026, and you may submit more than one comment.
Consider sharing:
What does a typical day with SCN2A look like?
What are the hardest parts of living with an SCN2A-related disorder?
What treatments, therapies, medications, or interventions have you tried?
What do you wish researchers, drug developers, and the FDA understood about SCN2A?
What would a meaningful future treatment look like for you or your loved one?
Your response does not need to be long or formal. Honest, personal experiences are incredibly valuable.
Every story helps us build a more complete picture of life with an SCN2A-related disorder and make sure our community is heard.
Community Meetings
Watch the Town Hall community meetings where we discuss the purpose and structure of the EL-PFDD meeting.
Part of the Patient-Centered Drug Development advocacy plan
Patient-Centered Drug Development is an intentional effort to ensure that patient needs and priorities are meaningfully included at all stages of clinical research and development. Regulatory and industry partners play critical roles in the treatment development process. Learn how FamilieSCN2A engages in patient-centered drug development by amplifying the patient voice with regulatory agencies and collaborating with industry partners.