On October 27-29, 2005 the National Hemophilia Foundation (NHF) hosted its 57th Annual Meeting at the San Diego Marriott Hotel and Marina. Over 2,200 people registered for NHF’s premiere event that carried the theme “Renewed, Strengthened, Empowered.” Representing the entire community spectrum were individuals with bleeding and clotting disorders and their families, medical and healthcare professionals, industry and homecare representatives, chapter staff and volunteers. These diverse groups attended sessions that featured high-caliber speakers and program content relevant to both consumers and providers.
Here are just a few highlights:
On the first day of the conference, NHF held a pre-conference consumer symposium for women with bleeding disorders. This first-ever symposium was created in response to requests by women to have multiple, substantive sessions and opportunities to meet other people who experience similar problems. Project Red Flag: Focus on Women with von Willebrand Disease, featured sessions on testing and treatment of von Willebrand disease (VWD), advocacy for women and psychosocial issues in VWD. Project Red Flag is NHF’s public awareness campaign to reach the approximately two and a half million women nationwide with undiagnosed bleeding disorders.
Another first was the Two-Day Medical Track for Physicians and Researchers in Bleeding Disorders. This track allowed prominent treatment professionals and researchers multiple forums to exchange information and present their findings. “Controversies in Bleeding Disorders” was organized into a dynamic point-counterpoint format, whereby physicians represented opposing positions on topics such as prophylaxis, von Willebrand disease designation and diagnosis, and treatment considerations for inhibitor development in children. The track also included medical sessions on rare factor deficiencies and platelet disorders, musculoskeletal issues, pre-implantation genetic diagnosis and “hot topics” in bleeding disorders. In addition, NHF’s Medical and Scientific Advisory Council (MASAC) held a full day meeting on Saturday to discuss pertinent agenda items and approve treatment recommendations.
The consumer track, which ran during the heart of the meeting on Friday and Saturday, covered important and practical topics such as communication in emergency room settings, nutrition, scholastic and vocational transitioning, plus other psychosocial, advocacy and treatment issues. Sessions such as the Update on Hepatitis C and Hemophilia, Sports, Ports and Prophylaxis and the Outdoor Walk with Physical Therapists, ensured that NHF’s “Do the 5!” Prevention Program messages were reinforced.
The nursing, physical therapy and social worker tracks also occurred on Friday and Saturday, attracting clinical professionals that provide integral care at treatment centers nationwide. The pertinent and timely topics ran the gamut, from port care to thrombophilia treatment, from radiologic evaluation to rehabilitation strategies, from sibling concerns to mindfulness and chronic illness.
NHF’s 58th Annual Meeting will be held in Philadelphia, PA on October 12-14, 2006.