Romy J. van Voorst
Researcher and patient advocate involved in studies on vanishing white matter; contributed to consensus recommendations and co-developed the patient management card to aid families and clinicians.
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Mar 2, 2026 • 3min
Consensus Recommendations for Diagnosis and Management of Vanishing White Matter - Part 2
Marjo S. van der Knaap, clinician-scientist and vanishing white matter expert, and Romy J. van Voorst, researcher and patient advocate, discuss a patient management card co-developed with families and clinicians. They cover why families needed harmonized care, how the card is used in consultations and emergencies, and which practical recommendations support decision-making and preventive measures.
