As new therapies flood the market, it is more important than ever that the hemophilia B community has a way to share, discuss, and stay connected. Because of the daily attention their disorder requires and, at times, limited mobility, it can be challenging for those impacted by hemophilia B to engage with their peers, in person. Hemophilia B Connected is an online discussion board (hosted on Slack) that serves as a bridge to the larger community. The digital app helps to ensure that we are addressing all avenues of communication so that critical information is not missed and false rumors are addressed immediately and corrected.
A key feature of Hemophilia B Connected is the "Ask the Experts” Channel, where experts from the hemophilia B community digitally “host” discussion sessions and participants can ask the host their specific questions and gain valuable information. This forum features a wide range of peer support and expert speakers educating on Advocacy, Psychosocial issues (depression, pain management, unaffected siblings), Physical Therapy, Nutrition & Exercise, Woman with Bleeding Disorders, Inhibitors, New Family Support, Aging with Hemophilia, and much more!