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News & Events

Spark Therapeutics and Pfizer have announced that the latter company has initiated a Phase 3 open-label, multi-center study to evaluate the efficacy and safety of current factor IX prophylaxis replacement therapy in the usual care setting.

Advanced Considerations for the Recognition, Appropriate Diagnosis, and Timely Management of von Willebrand Disease and Other Bleeding Disorders among Women in Non-Hematology Health Care Settings

Take part in a survey to shape VWD Guidelines. We want to hear from people with VWD, people who care for those with VWD, or clinicians and other healthcare professionals who treat people with VWD.

A recent article appearing in the journal Haemophilia, includes updates on the My Life Our Future (MLOF) project, which was established in 2012 to offer U.S. hemophilia patients ready access to free genotyping, a type of genetic testing that is often hard to access, expensive and not covered by insurance. MLOF is a partnership between the American Thrombosis and Hemostasis Network (ATHN), the National Hemophilia Foundation (NHF), Bloodworks Northwest and Bioverativ (formerly Biogen).

Medscape has launched the latest educational activity in their “Clinical Advances in Gene Therapy for Hemophilia” series, which is presented through a collaboration between Medscape, the National Hemophilia Foundation, the European Haemophilia Consortium and the World Federation of Hemophilia. The program is supported by an independent educational grant from BioMarin.

The goal of this effort is to create and maintain state-of-the-art guidelines on the diagnosis and management of VWD.

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