“Nothing About Us, Without Us”

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National Hemophilia Foundation Encourages Patient Community to Take an Active Part in Strategies, Policies, and Programs Directly Affecting Their Lives at 66th Annual Meeting in Washington, DC

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National and international entertainer Marcus Monroe will perform his one-man act during the 66th Annual Meeting’s Opening Session the evening of Thursday, September 18th.

The largest annual gathering of the bleeding disorders community in the United States will take place at the 66th Annual Meeting of the National Hemophilia Foundation (NHF) from Thursday, September 18th to Saturday, September 20th at the Washington Marriott Wardman Park Hotel, located at 2660 Woodley Road NW, Washington, DC 20008. This year’s Annual Meeting theme, “Nothing About Us, Without Us,” inspires our patient community to become active participants in the planning and shaping of state, federal, and community-based policies, treatment programs, educational services, and research that continually affects their daily lives.

The annual three-day gathering reunites individuals and families in the bleeding disorders community, NHF chapter staff, as well as industry partners and healthcare providers. Attendees take part in educational sessions, symposiums, and fun social activities including a two-day Medical Track for Physicians and Researchers, with special programming for nurses, physical therapists and social workers as well as a new Teen Track for 13 through 17 year olds.

Awards of Distinction and Excellence are presented to doctors and researchers in medical fields relating to bleeding disorders as well as to volunteers among NHF’s 52 community-based chapter staff throughout the U.S. National and international entertainer Marcus Monroe will perform his one-man act during the 66th Annual Meeting’s Opening Session the evening of Thursday, September 18th.

Val D. Bias, chief executive officer for the National Hemophilia Foundation, is a living witness of the physical, emotional, medical, financial, and advocacy struggles that individuals with a bleeding disorder face, both past and present. The loss of family members and friends to a bleeding disorder continues to add to this burden.

Diagnosed with hemophilia at a young age, Mr. Bias contracted HIV and the Hepatitis C virus (HCV) from the contaminated blood supply crisis during the mid-1980s to early-1990s. Yet, Mr. Bias has seen the progress that has been made in research, treatment, and advocacy over the years and dedicates his life to advancing NHF’s mission both in the United States and abroad.

Mr. Bias states: “Throughout my lifetime, I have witnessed the continued advancements in state and federal legislation, research, and drug treatment therapies that results in helping individuals with a bleeding disorder to thankfully lead a more normal and contemporary life. However, these achievements that we are experiencing today could not have come about without the steadfast participation and activism of our patient community working in collaboration with NHF’s chapter network, our state and federal legislative representatives, and our doctors and researchers in medical fields relating to bleeding disorders.”

He goes on to say that: “We have bonded together as a community with the message that we will not stop advocating until each patient has access to quality and effective medical care and support programs that will help us to manage the complications of our bleeding disorder each day with the promise that the discovery of potential cures are on the horizon. We must not become complacent because of the victories we have achieved, but become ever more vigilant and vocal because the challenges for our patient community are greater in the days ahead.”

The National Hemophilia Foundation, the American Thrombosis and Hemostasis Network, Puget Sound Blood Center and Biogen Idec, came together to launch My Life, Our Future, a nationwide campaign for progress in hemophilia. The program aims to help solve the mysteries of hemophilia by offering a free genotyping test to people with hemophilia A and B in the U.S., so that they may gain a deeper understanding of their disorder today, while helping to advance the breakthrough research of tomorrow.

To date, more than 1,250 people have enrolled in My Life, Our Future through nearly 50 participating hemophilia treatment centers. Eighty percent of those participants opted to contribute to research. This number marks a significant milestone in achieving our goal of helping the hemophilia community better understand the disorder and accelerate scientific breakthroughs. The program has also discovered 68 novel mutations of the hemophilia gene. Once 5,000 people contribute to MLOF’s research repository, scientists will be able to apply for access to study the data and samples, potentially leading to improvements in treatment and care.

Looking forward, NHF will continue to raise awareness about bleeding disorders and its challenges; advocate on federal and state levels for access to affordable and effective healthcare, treatment costs, and support programs for people with bleeding disorders; and push the boundaries of research to higher levels through national campaigns such as My Life, Our Future, with the promise to uncover new paths in treatment and potential cures that will allow individuals with a bleeding disorder to eventually lead normal lives.    

Interview Opportunities:

Please contact Keith Hudson via email at khudson(at)hemophilia(dot)org or cell phone at 917-992-4403 to secure interview opportunities with Val D. Bias, CEO, National Hemophilia Foundation and patient spokespersons.    

About the National Hemophilia Foundation
The National Hemophilia Foundation (NHF) is dedicated to finding better treatments and cures for inheritable bleeding disorders and to preventing the complications of these disorders through education, advocacy and research. Established in 1948, NHF is based in New York City with 52 chapters throughout the United States. NHF’s programs, initiatives and events are made possible through the generosity of individuals, corporations and foundations as well as through a cooperative agreement with the Centers for Disease Control and Prevention (CDC). For more information, visit NHF online at http://www.hemophilia.org. Follow NHF on Facebook at facebook.com/NationalHemophiliaFoundation and on Twitter @NHF_Hemophilia.com.


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Keith Hudson
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