At the Opening Session of the National Hemophilia Foundation’s (NHF) Bleeding Disorders Conference, October 3-5 in Anaheim, CA, outgoing CEO Val D. Bias spoke of the importance of speaking up in advance of the changes in treatment paradigms and access to care. Making your voice heard, said Bias, “keeps our community together.”
After a short video tribute that highlighted Bias's lifetime of service to the bleeding disorders community, Bias thanked the attendees for trusting in his vision and leadership during his eleven years of leading NHF, and for stories they shared with him, which, he said, "gave us the information we needed to plan for the future."
Understanding the experiences of living with a bleeding disorder is central to a new NHF program that Bias introduced at the conference, MyBDC. MyBDC is a community-powered registry that aims to capture the experiences of people living with a bleeding disorder and their family members and caregivers over a long period of time. The information will allow researchers to gain a better understanding of how a bleeding disorder affects individuals and families – directly from the people themselves. “The story of the bleeding disorders community needs to be written by us, not for us,” Bias told attendees.
NHF's Bleeding Disorders Conference is NHF's signature event, and brings all members of the bleeding disorders community together. Affected individuals and their family members, NHF chapter leaders and staff, physicians and researchers, nurses, social workers, and physical therapists all gather to gain valuable education, network, and receive support.
The conference is divided into twelve tracks, including the tracks for medical professionals. Affected family members can find sessions tailored specifically to them, including von Willebrand disease; sessions for adult men, teens, women with bleeding disorders, spouses and partners, parents and caregivers, and rare bleeding disorders.
The conference concluded with NHF’s Award Ceremony, which paid homage to the medical professionals, chapter leaders, and volunteers who do exceptional work to benefit the community. And at NHF Final Night Event, attendees gathered to eat, dance, and celebrate together.
NHF is grateful to Platinum Sponsors Bayer HealthCare, CSL Behring, Genentech, Novo Nordisk, Pfizer Hemophilia, Sanofi Genzyme, and Takeda; and Bronze Sponsors BioMarin, Hemabiologics, and Octopharma for their invaluable support.