WFH NETWORK

2014 Report Now Available: Annual Global Survey

Montreal, Canada – November 2015 – 

The Report on the Annual Global Survey 2014 is now available in print and online at: www.wfh.org/globalsurvey.

The 15th edition of the Report includes data from 106 countries, representing 91 percent of the world population. The total number of people identified with bleeding disorders is: 287,066 (178,500 people identified with hemophilia, 69,747 people identified with von Willebrand disease, 38,819 people identified with other bleeding disorders). The mean global per capita factor VIII usage is 2.25 IUs and 0.35 IUs for factor IX usage.

The Report on the Annual Global Survey is the most comprehensive source of data on bleeding disorders. It includes information on patients with inhibitors, reported rates of prophylaxis, gender distribution and reported use of factor concentrates. The 2014 edition is also the first to include data on the severity of hemophilia and data source.

In total, 82 countries submitted data for 2014, a nine percent increase from the previous year. Since not all of our members are able to report every year, some of the data reported in the Report on the Annual Global Survey is supplemented with historical data. Due to the high response rate in 2014, we were able to drop one year of historical data from the report, signifying an improvement in the overall data quality.

Thank you to our national member organizations (NMOs) for submitting Annual Global Survey questionnaires and contributing to global data collection.

Background

The Report on the Annual Global Survey includes selected demographic and other data on people with hemophilia (PWH), von Willebrand disease (VWD), other rare factor deficiencies, and inherited platelet disorders throughout the world. The purpose of this report is to provide hemophilia organizations, hemophilia treatment centres (HTCs), and health officials with useful information to support efforts to improve or sustain the care of people with bleeding disorders and to assist with program planning. Supplementary charts and graphs using 2014 data can be found on the website at: www.wfh.org/globalsurvey.

About the World Federation of Hemophilia

For over 50 years, the World Federation of Hemophilia (WFH), an international not-for-profit organization, has worked to improve the lives of people with hemophilia and other inherited bleeding disorders. Established in 1963, it is a global network of patient organizations in 127 countries and has official recognition from the World Health Organization. Visit WFH online at www.wfh.org.

For more information, contact globalsurvey@wfh.org.