2025 GLIA Scientific Meeting and Advocacy Workshop

Philadelphia, PA - The Global Leukodystrophy Initiative (GLIA) was honored to host the 2025 GLIA Scientific Meeting and Advocacy Workshop at the Children’s Hospital of Philadelphia. The event brought together a diverse group of clinical, scientific, advocacy, and industry stakeholders in a forum designed to showcase recent clinical and research advances across leukodystrophies, and identify opportunities for meaningful new interdisciplinary partnerships to address persistent challenges in the diagnosis, care, and treatment of affected individuals.

Video recordings of the scientific meeting sessions will be made available here by March 15, 2025. The advocacy workshop on Saturday, March 1 was not broadcast or recorded due to the highly interactive format of the event; however, a selection of meeting notes will be added to this page.

The two-day scientific meeting on Thursday, February 27 and Friday, February 28 served as an opportunity for leukodystrophy clinicians, researchers, advocacy leaders, regulatory officials, and industry partners from around the world to gather and learn from one another. The meeting organizers implemented a new format for this iteration of the event, with traditional disease-specific updates anchored by broader concept sessions highlighting current topics in newborn screening, therapeutic development, diversity and access, and advocacy engagement.

The advocacy workshop on Saturday, March 1 was reserved primarily for patient advocacy leaders, with industry representatives invited to listen and participate in select portions of the workshop to foster engagement. With over a dozen new patient advocacy organizations represented since this workshop was last hosted in October 2022, we were able to provide an unbiased forum for constructive discussion between leaders.

If you have any questions regarding the meeting or are interested in engaging with the Global Leukodystrophy Initaitive (GLIA), please contact Omar Sherbini (GLIA-CTN Administrative Director) at email@theglia.org or sherbinio@chop.edu.