The development of the community-based research initiative.
MyBDC is a community-based research initiative that will capture a 360-degree view of living with a bleeding disorder, directly from those affected and their relatives. These shared experiences will enhance the ability of researchers to improve current treatments, discover transformational therapies, and most importantly, contribute to finding a cure.
The goal is to add the community members’ experiences to current research efforts. MyBDC will help researchers understand what it means to live with a bleeding disorder from the perspective of the people who are affected, their siblings, partners, and caregivers, with the ultimate goal to improve quality of life (QOL), identify research questions important to community members, and together contribute to finding a cure. These first-hand experiences will direct the future of research.