The Sisters’ Hope Foundation externally-led patient focused drug development (EL-PFDD) session will be held on Friday June 20th, 2025. Information and insights gained during this meeting will be summarized in the “Voice of the Patient” report that will be published for public use. Register to participate in person or virtually through Zoom.
Please contact Erin Sullivan at [email protected] with any questions.
Jun 20 1:00 PM – 5:00 PM
Friday 6/20: FDA Patient Focused Drug Development (EL-PFDD) session for patients and care partners.
Agenda
1:00 pm – Welcome: Sisters’ Hope Foundation
1:05 pm – Welcome: FDA Representative1:10 pm – ALSP Clinical Overview: Clinician
1:20 pm – Introduction and Meeting Overview
1:25 pm – Remote Demographic Polling Session 1: Health and Daily Effects of Living with ALSP
1:30 pm – Panelist Testimonials2:00 pm – Moderated Audience Discussion and Remote Polling
3:00 pm – BREAK Session 2: Current Approaches and Future Preferences to Treating ALSP
3:15 pm Panelist Testimonials3:45 pm – Moderated Audience Discussion and Remote Polling
4:45 pm – Meeting Summary
4:55 pm – Next Steps and Closing
