More than 2,800 people in the bleeding disorders community gathered from October 11-13 in Orlando, Florida, to gain valuable knowledge, connect with one another and get support from the National Hemophilia Foundation (NHF) at NHF’s 70th Bleeding Disorders Conference.
NHF chose the occasion of its 70th anniversary to make a statement about the future of the organization, changing 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.”
For the first time, NHF 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. Attendees of the rare track learned about issues specific to them, including a session on head bleeds and another titled “The Lonely Island: Dealing with Being Rare,” which centered on managing feelings of isolation for people with rare bleeding disorders.
For people affected by von Willebrand disease (VWD), NHF held the three-hour pre-conference “VWD and the Whole Me,” a deep dive into how living with VWD affects people and how attendees with VWD experience the bleeding disorders community. There was also an “Ask the Experts” session, a session for men with VWD and a session on joint health, among other offerings.
Something for Everyone
NHF created sessions for families new to the bleeding disorders community, beginning with “Make the Most of NHF 2018,” to help new families orient themselves during the busy days ahead. Attendees could familiarize themselves with the mechanics of the clotting cascade during “These Are the Proteins in Your Neighborhood” and learn helpful tips for getting school accommodations during “Navigating Through Schools,” which covered individualized education programs and 504 plans.
Attendees heard the latest on treatment breakthroughs during the plenary session “Advancement in Treatments: Now and the Future,” featuring Glenn Pierce, MD, PhD, who discussed developments in gene therapy. Adult men considering knee replacement surgery could hear options during “New Wheels: Knees.”
Chapter leaders took part in a three-day educational track focused on connecting with the mission of their organizations. The track began with “Start with Why: Inspiring Action,” a session to help chapter staff focus on the core reasons behind chapters’ support of the community and how day-to-day actions could align with long-term goals. The mission-focused curriculum continued with “Messaging Your Mission: Communicating Your Why,” which aimed to hone chapter staff members’ communication skills to help them raise funds, engage donors and volunteers, and boost online engagement.
As always, the conference closed out with NHF’s Final Night Event, where attendees enjoyed music, food, dancing and activities including face painting, a workshop where kids could customize a stuffed animal and a photo booth.
NHF is grateful to the sponsors of the 2018 Bleeding Disorders Conference and would like to thank Diamond sponsor CSL Behring; Platinum sponsors Bayer, Genentech, Novo Nordisk, Pfizer Hemophilia and Shire; Gold sponsor Bioverativ; Bronze sponsors BioMarin, Hema Biologics and Octapharma; and Friend sponsors uniQure and Sanofi Genzyme.
NHF’s 71st Bleeding Disorders Conference will be held October 3–5 in Anaheim, California. We look forward to seeing you there!