The National Hemophilia Foundation (NHF) conducted a Strategic Summit on von Willebrand disease (VWD) on November 21, 2014, in Washington, DC. The purpose of the summit was to discuss key issues faced by patients and providers of care, and to develop a strategic approach for raising awareness of VWD and improving access to quality care for VWD patients in the evolving healthcare environment. The 38 summit participants included VWD patients, clinicians and researchers, payers, treatment manufacturers, representatives of relevant federal agencies and national organizations.
The attached report of the summit provides an overview of the presentations and discussion in the summit’s four key issue areas: (1) Recognizing and addressing stigma and marginalization; (2) Clinical challenges; (3) Hemophilia treatment center (HTC) and physician recognition and focus on VWD; and (4) Organizational recognition and focus on VWD.
NHF, in collaboration with other VWD stakeholders, commits to moving forward to develop strategies to address the challenges and unmet needs of patients with VWD identified by the summit and this report.
The summit and corresponding report speak to NHF's pledge to all those living with bleeding disorders by reasserting our commitment to meeting the needs of all men and women living with VWD. We look forward to working with the entire bleeding disorders community on this effort.
Read the NHF Strategic Summit Report on von Willebrand disease here.
