The World Federation of Hemophilia (WFH) World Congress will be held in the United States for the first time in 20 years in 2016 in Miami. WFH’s National Member Organizations (NMO) voted in favor of this decision in July at the 2012 World Congress in Paris. (See “A Warm Welcome,” page 32.)
NHF has been working with WFH for many years by participating in NMO trainings, providing organization updates in HemAware, sharing publications and participating in the Global Blood Safety Forums. Most recently, WFH approved NHF’s proposal to develop a twinning partnership with Nigeria. NHF will assist Nigeria with outreach efforts to educate patients, the general public and local organizations about hemophilia. We also will help with advocacy efforts to encourage the Nigerian government to recognize hemophilia as a noncommunicable disease and begin to provide assistance to patients. Currently, clotting factor product is only available through charitable donations through the Haemophilia Foundation of Nigeria. Otherwise, a patient must purchase clotting factor in a hospital at double the cost of what is charged in the US and without knowledge of where the factor is manufactured. NHF hopes that through this four-year twinning relationship, we can foster change within Nigeria and help the Haemophilia Foundation of Nigeria develop into a thriving WFH NMO.
One of the main reasons NHF was unable to host a WFH Congress in the US for the past two decades was the federal ban on overseas HIV patients traveling here. But in 2009, President Barack Obama announced the removal of the ban, which allowed NHF to move forward with the bid to host the 2016 Congress.
In this issue of HemAware, we also focus on the new medications that are available for HIV patients and how these new treatments are greatly prolonging their lives (see “Tackling HIV,” page 20). The To Your Health section (page 8) highlights important facts about influenza, this year’s flu season and the difference between colds and the flu. It also features a story on adult patients with heart disease and the value of routine screenings coordinated by your primary care physician.
With 2,930 in attendance, NHF’s 64th Annual Meeting in Orlando, Florida, in November 2012 was our highest attended Annual Meeting to date. Please check out highlights and photos from the meeting in this issue on page 14.
Neil Frick, MS, is the vice president for research and medical information at the National Hemophilia Foundation.