Maps offer a way to make sense of the unknown. “Mapping Our Future,” the theme of the National Hemophilia Foundation’s (NHF) 2012 Annual Meeting, signaled NHF’s intent to help people with inheritable bleeding disorders understand what’s coming next.
NHF’s Annual Meeting has always sought to unite all members of the bleeding disorders community, bringing together affected families, providers, chapter staff and industry professionals to provide education and a chance to reconnect with old friends and forge new relationships. NHF’s 64th Annual Meeting, held November 8 to 10 at the Orlando World Center Marriott Resort in Florida, allowed all these groups a chance to look at the map that NHF is drawing for the future of the organization.
At the Opening Session, NHF CEO Val D. Bias outlined a new initiative that he believes will have a profound effect on future research. NHF, the Puget Sound Blood Center and the American Thrombosis and Hemostasis Network, with funding from Biogen Idec Hemophilia, have come together to provide resources for and finance an initiative that will genotype (detect an individual’s specific genetic mutation) members of the bleeding disorders community. The results can then be used by researchers to search for better treatments and cures. The initiative, My Life, Our Future: Genotyping for Progress in Hemophilia, is launching in the first quarter of 2013 at several pilot sites across the country. A well-attended session about the program featured representatives from each of NHF’s partners, explaining the different aspects of the initiative. It was also live streamed online for people who were not able to attend in person. (Watch the video.)
As NHF focused on the future, there were plenty of educational opportunities for attendees concerned with more immediate needs. Families with newly diagnosed children attended comprehensive overviews, such as Hemophilia 101 and von Willebrand Disease 101. They were invited to a special reception for new families, and an orientation and welcome session for first-time attendees.
The conference also devoted several sessions to issues of importance to teenagers and their parents, such as the risks involved with tattoos and piercings that helped participants choose safe options for body art.
For providers, the Annual Meeting offered a plenary on inhibitors and a session on using telemedicine to connect with patients who don’t have immediate access to a hemophilia treatment center. Physical therapists had several hands-on sessions, including one on therapeutic taping to decrease swelling and another on aquatic therapy. Social workers attended sessions on helping parents manage difficult behaviors in their children, pain management and the changing landscape of street drugs.
NHF’s 65th Annual Meeting will take place October 3 to 5, 2013, in Anaheim, California. Stay tuned to NHF’s Web site for information on registration later this spring.