ICYMI: National Hemophilia Foundation Announces Collaboration on Von Willebrand Disease Guidelines

According to a June 20th report by the National Hemophila Foundation (NHF), the NHF along with several other prominent organizations in the bleeding disease community will be joining forces to create a new set of clinical guidelines. These guidelines are aimed to create a unified understanding of how to diagnose and mange the condition known as von Willebrand Disease. Keep reading to learn more, or click here for additional details available at the original source.

What is von Willebrand Disease?

Von Wille Brand Disease (VWD) is the most common known form of bleeding disorder. Some estimates suggest that it affects nearly 1% of the entire world population.

VWD is an inherited condition passed by genes from parents to offspring. The condition is marked by the lack of or abnormal functioning of a clotting protein known as von Wilebrand factor.

Common symptoms of VWD include unusual bleeding from small wounds, bleeding in joints, chronic nosebleeds, and heavy menstrual periods. Doctors who observe these kind of symptoms often refer patients to a specialist for further analysis and treatment.

Working Together

Two panels comprised of VWD experts (including hematologists, VWD patients, and evidence and guideline specialists) will work together to complete the new guidelines. NHF describes the goal of creating these measure as an effort to “create and maintain state-of-the-art guidelines on VWD.”

Groups working on the new guidelines include the NHF, the American Society of Hematology, the International Society on Thrombosis and Haemostasis, World Federation of Hemophilia, and the University of Kansas Medical Center. This collaboration represents the first between all of the listed groups in regards to clinical practice.

The panels will have several guidelines of their own to work from. The material for the VWD guidelines will be based upon such trends as: how frequently a question is relevant in clinical practice, how much variation occurs in clinical encounters with VWD, how the question is already being dealt with through other guidelines, and ways in which resources can best be brought to use. Patient care and effectiveness of caregivers, as well as quality of life, are also both major concerns.

Val Bias, CEO of NHF describes the collaboration as having great potential. Bias imagines it will be a high impact move for the VWD and bleeding disorder communities. “This collective effort will bring much needed information to medical professionals and play an important role in improving outcomes that are vital to the health of our families” Bias continues. “The enthusiasm from so many stakeholders to becoming part of the guideline project speaks volumes to the potential of this initiative.”


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