New Global Guidelines Issued for Vanishing White Matter (VWM) — A Significant Step Forward for Families and Care Teams We’re pleased to share a major advancement in the care of VWM. A new international consensus document has just been published, offering evidence- and expert-based recommendations for the diagnosis and clinical management of VWM. This is …
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ALEX TLC (Alex, The Leukodystrophy Charity) produces monthly research summaries highlighting recent leukodystrophy research and clinical trials, with a focus on key findings and advancements in treatment. These summaries are prepared by volunteer Biomedical Science students, who provide their interpretations of the latest studies and findings — helping make complex research more accessible to the …
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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A newly published article, “Endogenous Repair in Vanishing White Matter” explores how the brain may attempt to repair the white-matter damage characteristic of Vanishing White Matter (VWM) disease. This groundbreaking study was made possible through brain donations from VWM patients and their families. Their extraordinary generosity enables scientists to deepen their understanding of VWM and …
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