Attendees of NHF’s 2015 Annual Meeting

NHF’s 2015 Annual Meeting

The community gathers to learn and celebrate
Author: Beth Marshall

NHF’s Opening Session at the 67th Annual Meeting in Dallas kicked off with a video showing iconic images of Texas—oil rigs and cowboys—to the tune of “Deep in the Heart of Texas.” Texas is proud of its history and heritage. As such it was a fitting place for NHF’s Annual Meeting, an event where members of the bleeding disorders community can gather to celebrate, look back on their shared past and consider their future together.

This year, more than 2,800 people affected by bleeding disorders, their family members and caregivers, their healthcare providers and others convened in the sprawling Gaylord Texan Resort & Convention Center for educational sessions, social events and networking opportunities.

The theme of this year’s meeting was “Boots on the Ground,” which spoke to NHF’s renewed focus to provide resources and education for all aspects of the bleeding disorders­ community. This was reflected in several new sessions and initiatives. 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.

Jorge de la Riva and Val Bias shake hands onstage with large silver cowboy boot behind
Jorge de la Riva (left), Chair of the
Board of NHF, greets NHF CEO
Val D. Bias during the Opening Session.

Also new this year was outreach to families affected by FXIII deficiency. This is the rarest of the factor deficiencies, occurring in 1 in 5 million births. NHF, through a grant from Novo Nordisk, brought 12 families affected by FVIII deficiency to the meeting. The families received education specific to their needs and a chance to share their experience with others like themselves.

Several roundtable discussions allowed participants to have more intimate discussions on such topics as traveling with a bleeding disorder, how to get your child ready to self-infuse and pain management. There was a robust track for women with bleeding disorders, which ­covered subjects such as empowerment, genetic counseling, advice for newly diagnosed women and girls, and how to discuss bleeding disorders with daughters.

The meeting concluded with the Final Night Event at the Circle R Ranch. Everyone got a chance to have some fun, Texas-style, with armadillo racing, line dancing, and a rodeo featuring barrel racing and bull riding.

We hope to see you next year for NHF’s 68th Annual Meeting in Orlando, July 21–23, 2016. It promises to be the biggest one yet, as NHF will host the World Federation of Hemophilia’s World Congress on July 24–28. This will be a unique opportunity to meet people with bleeding disorders from around the world, and work toward building a brighter future together.

NHF is grateful to Platinum sponsors ­Baxalta, Bayer HealthCare, Biogen, Novo Nordisk and Pfizer for their support of the 67th Annual Meeting.

Jeanne White-Ginder, Carson Ouellette and Jorge de la Riva
Jeanne White-Ginder, left, presented the Ryan White Award to NYLI member Carson Ouellette for his work creating a chapter in North Dakota. Nikole Scappe (not pictured) was also honored with the Ryan White Award, which was accepted on her behalf by Carson and Jorge de la Riva (right).

Audience members ask questions
Madhusudhan Rajagopalan (left) and Sugastha Govindaraj (right) participate in the Q&A time during the session, “VWD, HTCs and You.”

Boy crouched down, watching walking armadillo
Kamryn Walker spurs on his armadillo at the Circle R Ranch.


Individuals in workshop learning Tai Chi
“Healthy Steps: Tai Chi” was one of three sessions that had attendees participating in new ways to get active.

Woman admiring hemophilia inspired red ballgown on display
The Blood Works Art Walk showcased the bleeding disorders community’s creative expression. An attendee admires a dress created by designer Christian Harris, inspired by his life with hemophilia.
 Bethany Sloan, PT, DPT (left), and Britta Gurgel, DPT, of The Hemophilia Center at Oregon Health presenting research results
Bethany Sloan, PT, DPT (left), and Britta Gurgel, DPT, of The Hemophilia Center at Oregon Health & Science University in Portland, proudly show off the results of their research at the Research Posters Reception.