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Women with hemophilia B have been historically under diagnosed, under-treated, and disregarded by the medical profession based on the false belief that women do not develop bleeding disorders. Women bleeders, and women who parent and care for those with hemophilia B, typically have little time to take care of themselves. Since 2014, this three-day program has provided rare and much- needed education, support, and inspiration to help women live with hemophilia B based on their relationship to it—as patients, mothers of children with the condition, and spouses of someone who has the disorder.
This program creates a safe space for women to find their voice, learn from top- notch experts, build skills to communicate and advocate for themselves and their families, and practice self-care. Participants learn about current and emerging treatments and strategies for managing hemophilia B. They explore wellness, nutrition, exercise, intimacy, mental health, health care management, treatment adherence, and finances. Women come away with strategies to help them live better lives, and they develop bonds of sisterhood that extend well
beyond the program.