The National Hemophilia Foundation (NHF) celebrates its 75th anniversary in 2023. Throughout the year, HemAware.org will be commemorating this special milestone with articles that look back at notable programs, initiatives, and events in NHF’s history.
Once a year, the National Hemophilia Foundation (NHF) holds its signature event, the Bleeding Disorders Conference (BDC). The three-day event, which was originally called the NHF Annual Meeting, is an opportunity for all members of the bleeding disorders community — including affected individuals and their family members, physicians, nurses, social workers, physical therapists, researchers, and industry partners — to come together to learn and share at educational sessions, workshops, industry symposia, and networking and social events.
Over the years, BDC has been held in California, Texas, Florida, and Washington, D.C., among other places. The 75th Annual Bleeding Disorders Conference takes place Aug. 17-19, 2023, at National Harbor, Maryland, near Washington, D.C.
At the 2023 BDC, educational sessions are divided into several tracks, including specific tracks for consumers, health care professionals, and chapter leaders and staff. Within the consumer track, which has offerings in English and Spanish, focus areas include parents/caregivers, spouses/partners, teens/young adults, men, ultra-rare bleeding disorders, inhibitors, mental health, von Willebrand disease, and women and people with the potential to menstruate.
In addition to the educational sessions, other popular highlights of BDC include the Awards of Excellence Ceremony — which pays homage to the medical professionals, chapter leaders, and volunteers who do exceptional work to benefit the community — and a final night event, where attendees gather to eat, dance, and celebrate together.
Below, a look at some of the notable announcements and developments at BDC in recent years:
NHF’s then CEO Val D. Bias announced the launch of the My Life, Our Future: Genotyping for Progress in Hemophilia (MLOF) initiative, which offered eligible individuals with hemophilia free genotyping, which is historically hard to access, expensive, and not covered by insurance. Ultimately, samples from more than 6,000 individuals were included in the repository to help advance the scientific understanding of the disorder. MLOF was a boon to researchers, particularly to those looking to better understand the genetic differences that affect bleeding severity and reactions to certain therapies.
The conference introduced a track for women and girls with bleeding disorders. Sessions included “Von Willebrand Factor Deficiency: Challenges for Girls and Women” and “Can We Talk? Moms, Daughters and Bleeding Disorders.”
For the first time, NHF offered a preconference session for people with von Willebrand disease (VWD). This four-hour session allowed participants a chance to talk with a panel of experts and learn more about the intricacies of VWD. Further, attendees were encouraged to provide direct feedback to NHF staff on the types of resources and support they need.
NHF chose the occasion of its 70th anniversary to change the name of its signature event to NHF’s Bleeding Disorders Conference. “The name reflects everyone in our community,” CEO Val D. Bias said during the Opening Session, “and signifies that NHF is an organization dedicated to all bleeding disorders.”
In 2018, NHF also created a track focused on people with rare bleeding disorders. Included in this track were NHF’s programs for people with factor X and XIII deficiencies, as well as sessions for factor I, II, V, VII, and XI deficiencies.
Val Bias introduced MyBDC (now called Community Voices in Research), 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.
2020 and 2021
Due to the COVID-19 pandemic, BDC was held virtually for two years in a row. In 2020, the conference was extended to one week and sessions were offered throughout the day as well as during evening hours, allowing access for attendees in different time zones.
After two years of virtual-only conferences, the 2022 BDC was held in person in Houston, but many sessions also offered a virtual component. The opening session included a tribute to former NHF CEO Val D. Bias, who died in December 2021.
The organization will officially unveil its rebranding, which includes a new name and look. The rebranding reflects the organization’s continued growth, expanded focus, and renewed commitment to serving the entire community.