Please join Kennedy Krieger Institute and Cure LBSL as they co-host a weekend of hope, sharing and education at the 4th biennual LBSL Patient and Scientific Conference. 

About the Conference

LBSL Patient & Scientific Conference. July 26-29, 2024. Baltimore, Maryland U.S. The Kennedy Krieger Institute & Virtual.

Join patients and families affected by LBSL (leukoencephalopathy with brainstem and spinal cord involvement and lactate elevation), together with advocates, researchers, clinicians, and regulators from around the world to learn about care, research advances, and build community. Patients will have the opportunity to participate in research studies and may be eligible for a research MRI. 

We hope for this event to bring hope and friendship to families while generating new opportunities for research collaboration and growth in advocacy.

Join us in person in Baltimore, Maryland, or virtually by Zoom. This event will be recorded and shared.

  • There is no charge for participation.
  • Childcare will be provided on site.
  • Language translation/interpretation services will be available.
  • The conference facility is fully accessible to those using mobility devices.
  • Lactation rooms and sensory/meditation spaces will be available.

Please use the registration form to register for the event and to let us know about your comfort and accessibility needs. 


Free Clinic Visit for Participants

Each 2024 LBSL International Conference participant may be eligible for a free clinic visit, research MRI, and participation in the natural history study ( Identifier: NCT03624374). Email for more information.

Please join us for a weekend of hope, updates and education at the Patient and Scientific Conference.
Register Today