Since 2015, the Coalition for Hemophilia B has hosted biannual retreats for caregivers, mothers, wives, and women with bleeding disorders to create a supportive environment where they will learn new methods of coping with the challenges of living with hemophilia B. Our goal is to empower women in the hemophilia community to find their voices and bond with others in similar situations. Women are often tasked with taking care of everyone in the family. When one or more child has a bleeding disorder, she may be left with little time to even remember what her own needs are. Wives of men with bleeding disorder may encounter feelings of concern and a desire to "mother" their husbands. Women who themselves have bleeding disorders are sometimes disregarded and not taken seriously, leading to incorrect diagnoses and inadequate care.
Retreat participants come from diverse backgrounds and the retreat environment gives them the opportunity to share their unique experiences and to be inspired and bond with sisters in the community. Our program puts an emphasis on Wellness by tackling topics such as depression, communication, self care, health & financial concerns, and many other issues that they face.