National Hemophilia Foundation CEO Val D. Bias spoke to the leaders of NHF’s 52-chapter networks at the NHF 2018 Chapter Leadership Seminar in San Francisco, California. He outlined the new focus of NHF’s research initiatives, including patient-reported studies, longitudinal research as well as bench science leading to better treatments, and the importance of uniting together as one community to support these efforts.
Building on the success of My Life, Our Future, which has created a first-of-its-kind research repository of more than 11,000 genotype samples, NHF is working to continue its collaboration with ATHN and Bloodworks Northwest to expand its focus into rare bleeding disorders, von Willebrand disease, and more.
Finally, he highlighted our NHF initiated research through our longitudinal research project. This is an opportunity for patients to provide data on an annual basis through a secure and confidential online survey tool that will follow them over many years and drive the future of research.
He concluded by thanking our chapter leadership for their role in driving our initiatives in our communities across the country. This is an exciting time in our community, and we will only be able to move forward together.