Join Us!

The LBSL externally-led PFDD meeting will be held on Friday, Aug. 1, 2025, in Washington, D.C. Representatives from the U.S. Food and Drug Administration (FDA) will join us in person and virtually to hear directly from people living with LBSL. This hybrid event is open to anyone with LBSL and their families, and will also be live-streamed for those who cannot join us in person. After the event, we share a meeting recording and Voice of the Patient report to help inform future drug development. ​