WFH NETWORK

Report on the Annual Global Survey 2020 now available

The Report on the World Federation of Hemophilia (WFH) Annual Global Survey (AGS) 2020 is now available online. The report includes global demographic and treatment-related data on people with hemophilia (PWH), von Willebrand disease (VWD), other rare factor deficiencies, and inherited platelet disorders.

In 2020, a total of 120 national member organizations (NMOs) contributed to the report despite continued challenges related to COVID-19. This year, first time respondents included Angola and Djibouti, while other NMOs such as Malta, Peru and Spain submitted data for the first time in many years.

This year, the report is broken down into two sections: one section includes historical global data that portrays the growth in patient identification and reporting over time. The second section specifically illustrates 2020 data. Globally over time, there have been 393,658 people with bleeding disorders identified and reported (241,535 people with hemophilia, 87,729 with von Willebrand disease, and 64,394 with other bleeding disorders).

The 2020 Report shows that treatment equity remains a concern, as the mean and median global factor use per capita are disproportionately higher in high-income countries and go below the recommended minimum of one IU per capita in lower-middle and low-income countries.

This year, the report also includes new tables showing the number of patients being treated with FVIIIa and FEIBA, as well as products used to treat VWD. This new information helps to more comprehensively portray the treatment capabilities of countries globally.

The AGS continues to improve and remains a great monitoring tool for the bleeding disorders community. The use of AGS data can lead to better research and advocacy aimed at improving hemophilia care. The WFH is thankful for the participation and support of all NMOs who have continuously supported our data collection efforts.

To access the WFH Annual Global Survey 2020, please click here. Supplementary charts and graphs are available online here to provide more information about bleeding disorders. For more information about the Annual Global Survey, please contact [email protected].