Over time, these data have also allowed WFH to track programme progress, target resources and identify development needs [14]. Historically, WFH country development programmes focused on one or two elements of the WFH Model. To advance care further and faster, O’Mahony had an idea for a new intensive programme that would work on all five development elements at once to close the gap

in diagnosis, access to treatment products and mortality that existed between developed and developing countries. On World Hemophilia Day (April 17) in 2003, the WFH launched the Global Alliance for Progress (GAP) Program, which was a culmination of all that the WFH had learned about building sustainable care. This 10-year health care development initiative aimed to greatly increase the diagnosis LY2835219 and treatment of people with haemophilia in 20 developing Rapamycin purchase countries. An overarching goal was to identify 50 000 people with haemophilia globally. In 2013, GAP celebrated its tenth anniversary and a decade of success in achieving

demonstrable change in each of the 20 participating countries (Algeria, Armenia, Azerbaijan, Belarus, China, Ecuador, Egypt, Georgia, Jordan, Lebanon, Mexico, Moldova, Morocco, Peru, Philippines, Syria, Thailand, Tunisia, Russia and South Africa). In these countries, to date 26 381 patients with haemophilia were identified and national care programmes were established in 16 countries. Globally, the number people diagnosed with haemophilia increased from 105 971 in 2003 [15] to 167 110 in 2011 [16]. Although the success of health care development projects like GAP depend on a winning coalition it is often the patient leaders, those who have the most to gain or lose, who are the local drivers for change. To better prepare the WFH NMOs in the late 1990s, the WFH began developing workshops to help patient leaders develop the skills to lobby their government for improved care. This grew into a global advocacy in action training programme launched in 2006. So far, over 1000 patient organization leaders have been trained and gone on to improve care

MCE公司 in their own countries. Soon after being elected WFH president in 2004, Mark Skinner (US) led the WFH to adopt the vision of Treatment for All, which is the foundation upon which the WFH’s global development strategy is built today [17]. Treatment for All means that one day treatment will be available for all patients with inherited bleeding disorders regardless of where they live. It also means more than simply access to treatment products. It means: Proper diagnosis, management and care by a multidisciplinary team of trained specialists; Safe, effective treatment products are available for all people with inherited bleeding disorders; Expansion of services beyond haemophilia, to those with von Willebrand’s disease (VWD), rare factor deficiencies and inherited platelet disorders.