Experts chart new path to improve care for rare bleeding disorder
An international consortium of researchers has identified critical gaps in how von Willebrand disease is diagnosed and managed, particularly in women, signaling opportunities for diagnostic innovation and treatment advancement. The consensus could reshape clinical protocols and attract investment in an overlooked area of rare disease medicine.
Originaltitel: Seventh Åland Island Meeting on von Willebrand Disease
INTRODUCTION: The seventh Åland Island Meeting on von Willebrand Disease (VWD) was held on the Åland archipelago in Finland, from 26 to 28 September 2024. AIM: The meeting brought together experts in the field of VWD from around the world to share the latest advances and knowledge in VWD. RESULTS AND DISCUSSION: The topics covered both clinical aspects of management and biochemical and laboratory insights into the disease. The clinical topics discussed included epidemiology of VWD, the diagnostic landscape and treatment strategies. Special attention was paid to the challenges of VWD in women and to the definition of disease severity, both key areas of ongoing clinical debate. Emerging research in bleeding disorders was also highlighted. Much has been achieved in the diagnosis and treatment of VWD, and the outlook is positive for people with VWD, who can expect continued improvements in their care in the coming years. To ensure optimal translation of increased understanding to improved care of people with VWD, a multidisciplinary approach with biochemists, geneticists and cell biologists partnering with clinicians and industry is needed.