The Global Leukodystrophy Initiative (GLIA) seeks to accelerate research and promote education and awareness efforts across the leukodystrophies by facilitating communication and collaboration between clinical experts, basic science researchers, patient advocacy representatives, and industry leaders.

In September 2019, the Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) was established as part of a five-year Rare Diseases Clinical Research Network (RDCRN) grant awarded by the National Institutes of Health. The GLIA-CTN is a research consortium comprising over a dozen domestic research sites involved in collection and analysis of longitudinal natural history data, development of novel clinical outcome assessments, and identification of surrogate biomarkers.

In parallel to these activities, the GLIA-CTN has worked closely with a diverse group of stakeholders, including the leukodystrophy patient and advocacy communities, to promote disease awareness and education, adoption of universal newborn screening and early diagnostic programs, and establishment of clinical guidelines to support the short- and long-term care of individuals living with leukodystrophies.

We invite you to learn more about these initiatives by visiting our website at https://theglia.org or https://glia-ctn.rarediseasesnetwork.org. For more information, you may also contact our Administrative Director, Omar Sherbini, at 215-590-3068 or sherbinio@chop.edu.

Visit https://theglia.org/2022gliaconference to watch the 2022 GLIA Scientific Meeting.