At the Opening Session of the National Hemophilia Foundation’s (NHF) 71st Bleeding Disorders Conference, held October 3-5 in Anaheim, California, 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.”
Understanding the experiences of living with a bleeding disorder is central to a new NHF program that Bias introduced at the conference, MyBDC. A community-powered registry, MyBDC aims to capture not only the experiences of people living with a bleeding disorder but also those of their family members and caregivers over a long period. 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 conference attendees.
Over the conference’s three days, more than 2,500 attendees—families, providers, chapter leaders and exhibitors—learned about nearly every aspect of living with a bleeding disorder. At “Advancements in Treatment for Hemophilia,” Margaret Ragni, MD, shared the latest information on new and emerging therapies for the disorder. The hot topic of gene therapy was discussed in two sessions: “Gene Therapy: Getting Up to Speed,” presented by NHF’s Medical and Scientific Advisory Council Chair Steven Pipe, MD, and “Gene Therapy: A Candid Conversation,” which presented a patient-centric discussion about how gene therapy could affect the community.
Attendees also had ample opportunities to learn more about the day-to-day experiences of living with a bleeding disorder. For new parents, “Comfort Me: Infusing Infants and Toddlers” allowed both parents and providers to share insights into making infusions less stressful. In “Ask the Experts: Aging with a Bleeding Disorder,” men with bleeding disorders shared their concerns and learned helpful information about reducing risk for falls, including strengthening muscles and assessing bone health.
Women with bleeding disorders had plenty of education to choose from, including “What’s in a Test?” which guided women through the often-confusing array of diagnostic testing for women with symptoms of a bleeding disorder. “Who Runs the World? Girls!” featured a lively panel discussion of young women with bleeding disorders who are not letting their conditions hold them back from achieving their goals. The conference also featured a Period Party, where attendees could talk about period stigma and menstrual equity while packing donated period products for Grandma’s House of Hope, a local nonprofit dedicated to assisting vulnerable, underserved and economically disadvantaged people in Orange County.
The conference concluded with NHF’s Awards Ceremony, which paid homage to the medical professionals, chapter leaders and volunteers who do exceptional work to benefit the community. And at NHF’s Final Night Event, attendees gathered to eat, dance and celebrate together.
NHF is grateful to conference Platinum sponsors Bayer HealthCare, CSL Behring, Genentech, Novo Nordisk, Pfizer Hemophilia, Sanofi Genzyme and Takeda as well as Bronze sponsors BioMarin, Hema Biologics and Octapharma for their invaluable support.