The National Blood Disorders Foundation (NBDF) and the American Thrombosis & Hemostasis Network (ATHN) are collaborative partners that share many key aspects of their missions, most importantly, improving the lives of people affected by inheritable blood and bleeding disorders. True to their missions, ATHN and NBDF are mutually committed to advancing research based on clinical and patient generated data.
Through its national health informatics platform, ATHN’s stewardship of the most comprehensive hemostasis dataset in the United States (US) has supported the US Hemophilia Treatment Center Network in the delivery of care and services through the comprehensive care model and introduced novel research into the bleeding disorders community. As the largest patient advocacy organization in the US for inherited bleeding disorders, NBDF understands the issues facing consumers and treatment centers and advocates for them daily. NBDF and ATHN are collaborating to better serve the community, ensuring that resources are shared without duplicating efforts.
NBDF and ATHN look forward to leveraging their strong and supportive partnership to continue to serve the blood disorders community. To that end, ATHN and NBDF are joining to form the ATHN / NBDF Data Commons, a program designed to collect, analyze, and disseminate the richness of blood disorders data with the goal of linking clinical outcomes to the patient experience utilizing the expertise of both organizations.