Advocacy Efforts

As the only patient advocacy group in the world focusing on LBSL, Cure LBSL has been advocating for the patient voice to be heard with industry and U.S. regulators. We attend and participate in conferences and symposiums throughout the year.

LBSL Patient Listening Session

Cure LBSL co-hosted a Patient Listening Session with the U.S. Food and Drug Administration on May 23, 2023, to share the patient voice with regulators, reviewers and others who will be involved in the evaluation and approval process for future treatments. During the 90-minute closed-door virtual meeting, nine patients shared what it’s really like to live with LBSL, in their own words or through their caregivers.  Want to review of copy of the report or other meeting materials? Email info@curelbsl.org.