The US bleeding disorders community will welcome the world to the 2016 World Federation of Hemophilia’s (WFH’s) World Congress in Orlando, Florida, on July 24–28. This is an important milestone for WFH and the National Hemophilia Foundation (NHF), marking the first WFH World Congress that will take place in the US since 1990.
The return of the WFH World Congress to the US demonstrates NHF’s commitment to the WFH’s vision of Treatment for All. It also shows NHF’s allegiance to the WFH’s mission to improve and sustain care for people with inherited bleeding disorders around the world.
NHF has long played an integral role in supporting the global bleeding disorders community. In fact, it was one of the founding members of the WFH. During the past 50 years, American healthcare professionals, members of multidisciplinary care teams, patient leaders and volunteers have helped guide and strengthen WFH programs and initiatives.
Currently, NHF is a part of the WFH Twinning program, which aims to improve hemophilia care in emerging countries through a formal, two-way partnership between hemophilia organizations. NHF is twinned with Nigeria. They are working together and sharing information, and transferring expertise, experience, skills and resources.
This support through WFH USA, an affiliated entity that advances the global mission of the WFH, is critical to the WFH’s Humanitarian Aid Program. Created in 1996, the program channels donations of life-saving treatment products to people with bleeding disorders who need them all around the world. This program is one of the many ways the organization supports its vision of Treatment for All.
The WFH receives donated factor product from manufacturers, homecare companies and treatment centers in the US and globally, which are then distributed to WFH national member organizations (NMOs) and hemophilia treatment centers (HTCs) in different parts of the world. The donations provide immediate care and relief to those in need who are facing life-threatening bleeds or are undergoing a dangerous but necessary surgery. They also demonstrate to local governments the efficacy of clotting factor and the benefits of purchasing these products on an ongoing basis. These are critical steps in creating a sustainable system for the care of those with a bleeding disorder.
The global distribution of treatment products is an immense and costly undertaking that involves many in the WFH’s global network. However, the majority of the donations and shipments are secured and distributed through WFH USA and Hemophilia of Georgia in Atlanta. Their assistance, along with the Irish Haemophilia Society and the Angelo Bianchi Bonomi Hemophilia and Thrombosis Centre in Milan, Italy, makes this program possible.
Another important link between the WFH and the US bleeding disorders community is the WFH Susan Skinner Memorial Fund Scholarship, established through WFH USA in 2007. This scholarship supports young women in the bleeding disorders community with training, education and leadership development. Eligible candidates are between 18 and 30 years old and from the US or abroad. They must show the potential to be future leaders in the bleeding disorders community. The fund commemorates the late Susan Skinner, who worked tirelessly to secure effective treatment for her two sons.
Many other WFH programs benefit from the support and participation of the US bleeding disorders community. Globally, one in 1,000 people has a bleeding disorder, the vast majority of whom still receive very inadequate care or no treatment at all. It is only through the tireless work of the countless WFH volunteers, including many from the US, that we can together achieve Treatment for All people with bleeding disorders around the world.