Welcome to MyBDC!
MyBDC is a partnership between the bleeding disorder community and NHF. MyBDC is an initiative to document the experiences and stories of persons living with inherited bleeding disorders and their immediate relatives over the years. Our goal is to add these viewpoints to current research efforts and provide information to community members to play a more active role in their healthcare. MyBDC will help researchers understand what it means to live with a bleeding disorder from a community member's perspective with the ultimate goal to improve quality of life (QOL), identify research questions important to the community, and together contribute to finding a cure.
By participating, you will gain access to an individual dashboard (launching in October 2019), to access your personal data as well as community metrics.
MyBDC will be open to all people affected by inherited bleeding disorders as well as family members (parents, spouses, grand-parents, siblings, and children).
All information gathered is confidential. We do not share your personal information with any third parties for marketing or other purposes.
Please complete this form for each individual who will be participating in MyBDC.