On November 19 to 20, the World Federation of Hemophilia (WFH) is bringing together patients, health care professionals and members of our national member organizations (NMOs) for a two-day Global Summit on women and girls with inherited bleeding disorders. This event will help participants learn more about the realities of how women and girls are impacted by bleeding disorders, and address diagnosis challenges. It will also help participants become more aware of the stigma and isolation that is often experienced by female patients, and find out about what NMOs are doing to raise awareness and advocate for these women and girls. Everyone wants to be heard and to feel recognized.
Women and girls with inherited bleeding disorders (WGIBD) have been underserved in the community. They have felt invisible, often experiencing either incorrect diagnosis, very late diagnosis, or no diagnosis at all. The quality of life of women and girls living with hemophilia, VWD, and other rare bleeding disorders has been—and continues to be—severely impacted. This is an unfortunate reality for women and girls worldwide.
For the WFH, all bleeding disorders matter—and all patients deserve adequate care and treatment. Over the years, the mission of the WFH has broadened to include von Willebrand disease, platelet disorders and rare factor deficiencies. This has made it possible for advocacy to be conducted for all patients, no matter where they live and what type of bleeding disorder they have.
Improving the current situation faced by WGIBD can only start with education and by developing a global awareness and understanding of how bleeding disorders effect women and girls. The WFH Global Summit on women and girls with inherited bleeding disorders is an important first step in this process. The event will provide participants with the opportunity to hear directly from women who have a bleeding disorder and learn about what they have experienced and how they are working for change in their local communities. The program for the summit is robust and offers sessions on clinical management and quality of life issues. It also offers concrete examples of how NMOs are working for WGIBDs. The WFH will also be launching a new initiative on women and girls at the event.
The WFH Global Summit on women and girls with inherited bleeding disorders is an important step for ensuring that the voices of women and girls are heard, and for encouraging future collective actions. Join us on November 19 to 20 for this important global event by registering here.
For more information, please contact Luisa Durante at [email protected].