The National Hemophilia Foundation’s (NHF’s) 69th Annual Meeting in Chicago began with a message of unity. Reflecting on the battles the bleeding disorders community has faced together—from fighting for safer therapies after the devastation of HIV and AIDS in the ’80s and ’90s to the recent efforts to retain the protections of the Affordable Care Act for people with bleeding disorders and other chronic conditions—NHF CEO Val D. Bias said, “Each time we are threatened, we unite and we take action.”
There were plenty of opportunities for action at the three-day meeting, held August 24–26, 2017. The nearly 3,000 attendees—people affected by bleeding disorders and their families, chapter staff and volunteers, physicians and researchers, nurses, physical therapists, social workers, pharmacists, and a wide array of exhibitors—could choose from a cornucopia of educational sessions and networking events tailored to their needs.
Families with newly diagnosed children could gain confidence and skills at such sessions as “Keeping Your Head Above Water: Help for the Newly Diagnosed,” which offered practical tips from hemophilia treatment center staff and veteran parents. There were also interactive sessions on what to expect from a clinic visit for people with hemophilia or von Willebrand disease and on what parents need to know when choosing a health insurance plan.
The three-hour “What’s Your Ask: Women’s Forum” discussed advocacy, research, outreach and educational priorities of the community of women with bleeding disorders. Women could also find answers at “Carriers: Ask the Experts” and “Bleeding Without a Diagnosis for Women.”
“The Power of X,” NHF’s program for people with factor X deficiency, returned for its second year, with 20 families attending. NHF added a program for families affected by factor XIII deficiency—which affects 1 in 5 million people—and welcomed 16 families. Both programs offered targeted educational sessions and access to the rest of the meeting.
Pain management was a new focus at this meeting, with four sessions focusing on how individuals and caregivers can manage pain. One session focused on recognizing signs of opioid abuse, with “Let’s Talk Addiction,” while other sessions concentrated on alternative methods of dealing with pain, including music therapy and virtual reality technology.
Gene therapy and new advances in treatment were the focus of sessions for both affected families and providers. “The Cure Horizon: Point/Counterpoint” and “New Treatments and Gene Therapy” discussed what the future of bleeding disorders treatment may look like for patients, while “Update on Novel Technologies and New Therapies for Inhibitors” and “Update on Gene Therapy Research: What’s the Latest?” gave an in-depth look to physicians and researchers.
The meeting ended with the Final Night Event at the Field Museum. Sponsored by Bioverativ, the party allowed attendees to explore exhibits at the museum, relax, grab a bite and dance with friends old and new.
NHF is grateful to Platinum sponsors Bayer, Bioverativ, CSL Behring, Genentech, Novo Nordisk, Pfizer Hemophilia and Shire for their support.