von Willebrand disease (VWD) is a rare disease, but one of the most common bleeding disorders, with up to 1 in 1,000 people affected by symptomatic bleeding from VWD. Differences in diagnosis and treatment practices in VWD prompted the WFH, the American Society of Hematology (ASH), the National Hemophilia Foundation (NHF) and the International Society on Thrombosis and Haemostasis (ISTH) to enter into a collaboration to develop clinical guidelines.
Fiona Robinson, Educational Materials Manager at the WFH explained how clinical guidelines help healthcare providers and patients to make informed decisions. The WFH Guidelines for the Management of Hemophilia are an excellent example, as they are extensively used on a global scale to share best practices, promote advocacy and improve communication between people with hemophilia and their comprehensive care team.
Paula James, Clinical Co-Chair of the VWD Diagnosis Guidelines Development Panel described how two expert panels—one for VWD diagnosis and the other for its management—will develop the guidelines with the help of a team of expert methodologists. These panels are made up of expert healthcare professionals and VWD patients from around the world, nominated by the four collaborating organizations.
The WFH, NHF, ISTH and ASH recognize the unique expertise of people living with VWD and the importance of their contributions to the guideline development. The panels will be better able to make recommendations for diagnosis and management if they can learn from the lived experiences of as many patients as possible. People living with VWD are invited to contact Luisa Durante, Program Development Manager, WFH by e-mail (firstname.lastname@example.org) so that they may be contacted with opportunities to participate in potential surveys and focus groups. Don’t be shy—add your voice!