On April 17, 2008, the World Federation of Hemophilia (WFH) commemorated its 20th annual World Hemophilia Day in Canada and throughout the world. The theme for this year was Count Me In, with the goals of identifying and diagnosing the estimated 400,000 individuals with hemophilia worldwide. According to WFH only 30% of the global hemophilia population has been identified, warranting the need for a vigorous awareness and outreach campaign.
“With treatment, people with hemophilia can expect to live a long, healthy life," says Claudia Black, CEO and executive director of WFH. “Without treatment, they face a life of continual pain, disability, isolation, and premature death. Most people with severe hemophilia who do not receive treatment die before the age of 19.”
Hemophilia organizations in more than 100 countries held awareness activties to coincide with the day. Among its many activities, the Canadian Hemophilia Society (CHS) and it’s Quebec Chapter also hosted an awareness event at the Montreal Central Train Station. Staff and volunteers interacted with the public, distributing education materials, answering questions and raising funds for research.
WFH also launched the Count Me In resource kit, which includes an outreach fact sheet, educational materials, awareness poster, suggested activities and a new publication, the “Patient Outreach Guide for Hemophilia and Other Bleeding Disorders.” You can access these resources from the www.wfh.org.
World Hemophilia Day was created in 1989 to honor the birthday of Frank Schnabel, WFH founder. WFH is an international nonprofit organization dedicated to improving the lives of people with hemophilia and other bleeding disorders. Established in 1963, it is a global network of patient organizations that is officially recognized by the World Health Organization.
Source: Medical News Today, April 17, 2008