LBSL Patient Registry

Cure LBSL is working hard to create a comprehensive, inclusive, international LBSL Patient Registry.  Our goal is to collect meaningful, actionable information that can help guide future clinical and research endeavors.​

Before we can do that, we need to know where LBSL families live, what languages they speak, and approximately how many people might be interested in participating in an LBSL Patient Registry.  ​

In 2022, Cure LBSL launched the first LBSL International Contact List (available in 22 languages). We encourage all people with LBSL and their families to join the Contact List to be notified when the full Patient Registry is ready for enrollment.