ALSP

New Global Patient Registry for MicrogliopathiesGlia

News / November 10, 2025

GliaConnect has launched a new global patient registry for individuals and families affected by microgliopathies such as ALSP, BANDDOS, and Nasu-Hakola Disease. In partnership with Sanford CoRDS, this registry helps bring together patients, families, and researchers to advance understanding and treatment of these rare disorders. The data collected will help identify symptoms, improve care management, …

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STUDY: Rescue of in vitro models of CSF1R-related adult-onset leukodystrophy by iluzanebart: mechanisms and therapeutic implications of TREM2 agonism

News, Research / February 19, 2025

Understanding CSF1R-Related Leukodystrophy and a Potential New Treatment: Iluzanebart This study titled Rescue of in vitro models of CSF1R-related adult-onset leukodystrophy by iluzanebart: mechanisms and therapeutic implications of TREM2 agonism and published by Journal of Neuroinflammation, explores CSF1R-related adult-onset leukodystrophy with axonal spheroids and pigmented glia (CSF1R-ALSP), a rare neurodegenerative disease caused by mutations in …

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Heather & Holly, ALSP

Share Your Story / September 19, 2021

By Heidi Edwards I’m Heidi Edwards, President and founder of Sisters Hope Foundation, a non-profit organization supporting families struggling with Hereditary Diffuse leukodystrophy with spheroids or HDLS. HDLS is now known as Adult-onset leukoencephalopathy with axonal spheroids and pigmented glia, or ALSP. I am also a caregiver for my twin sister Holly who has the …

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