Leukodystrophies – Disease Knowledge Hub

Clinical Rating Scales

Gross-Motor Function Classification for Metachromatic Leukodystrophie (MLD)

Guidelines

Minimal requirements for MRI data
International recommendations for the diagnosis and management of patients with Adrenoleukodystrophy (ALD)
Consensus-Based Expert Recommendations for Diagnosis and Clinical Management of Vanishing White Matter
NEUROGED Guidelines:
EAN x EFAS x INUS Guidelines on the assessment and treatment of neurogenic urinary and sexual symptoms
Recommendation for clinical management of newborn screening in Metachromatic Leukodystrophy
Standard Operating Procedure of Nerve Conduction Studies

Provided by Metachromatic Leukodystrophy initiative (MLDi)

Diagnosis

Diagnostic Flowchart for Leukodystrophies

Information for Patients – Endorsed by ERN-RND

Vanishing White Matter Patient Management Card

Established by Vanishing White Matter (VWM) experts from the VWM consortium, other experts, and patient advocates from the VWM Families Foundation (VWMFF), United Leukodystrophy Foundation (ULF), and Volwassenen, Kinderen en Stofwisselingsziekten (VKS)