As part of their international collaboration to develop guidelines for the diagnosis and management of von Willebrand disease (VWD), the American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), the National Hemophilia Foundation (NHF) and the World Federation of Hemophilia (WFH), along with the guidelines methods team, conducted a stakeholder survey to identify topics of highest importance that could be addressed by the guidelines. This paper, freely available in Haemophilia Journal, the official journal of the WFH, shares the findings of this survey. A remarkable number of stakeholders participated in the survey from all over the world including people with VWD, their carers, hematologists, and other members of the comprehensive care team.