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.

Register here!

Agenda
1:00 pm - Welcome: Sisters’ Hope Foundation
1:05 pm - Welcome: FDA Representative
1:10 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 Testimonials
2:00 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 Testimonials
3:45 pm - Moderated Audience Discussion and Remote Polling
4:45 pm - Meeting Summary
4:55 pm - Next Steps and Closing

Date: Friday, June 20th, 2025
Time: 1pm-5pm
Venue: Live! Casino & Hotel, 900 Packer Avenue, Philadelphia, PA

Please contact Erin Sullivan at erin@sistershopefoundation.org with any questions.