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. More details will be shared as planning begins.
EL-PFDD Event Details
Friday, October 23, 2026
In person - Washington, DC
The meeting will also be live-streamed with opportunities for robust virtual participation
Capturing the Patient and Caregiver Voice
The main goal of this event is to capture the patient and caregiver voice. We want to hear from you!
Schedule time with Melody Kisor, Director of Advocacy, to share your story. If the time you need is not available on the booking calendar (including nights and weekends), please reach out for assistance.
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.