The Gen IX program is a powerful weekend of challenges, empowerment, education, and support for teens living with hemophilia B. It’s also a leadership training ground young adults who will be our community’s future leaders.
Each year we award four or more scholarships to students with hemophilia B or their siblings. $220,000 has been given in the past 12 years.
Let’s Play Nine golf outing makes it possible for children with hemophilia B to participate in a fun strength- and skills-building activity that offers a healthy lifestyle option they can continue to do as they age.
BCares is our emergency assistance fund, designed to provide urgent help to individuals or families affected by hemophilia B when they are faced with specific critical needs.
In 2018, with the help of 25 community volunteers, we are holding our largest number of Hemophilia B Family “Meetings on the Road.”
Launched in January 2018, our 100% HIPAA-compliant online discussion board gives people with hemophilia B and their loved ones the opportunity to ask questions, share experiences and connect with one another.
Our spring and fall retreats give men and women in our community a chance to bond with others who have encountered similar challenges. There is always a waiting list.
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.
Every Christmas we help families in need by providing holiday gifts, food, clothes, boots, and more.