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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.

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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].

We’ve accomplished a lot this year, we need your help to continue strong.

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Disclaimer

The information on the WFH website is provided for general information purposes only. The WFH does not engage in the practice of medicine and under no circumstances recommends particular treatment for specific individuals. For diagnosis or consultation on a specific medical problem, the WFH recommends that you contact your physician or local treatment centre. Before administering any products, the WFH urges patients to check dosages with a physician or hemophilia centre staff, and to consult the pharmaceutical company’s printed instructions.

While every effort has been made to ensure the accuracy of the information on this site, the WFH does not guarantee the information is accurate, and is not responsible in any way whatsoever for damages arising out of the use of this website or any of the information contained herein.

Messages posted to WFH discussion forums, Facebook, Twitter, and other social media platforms do not represent the opinions of the World Federation of Hemophilia, its staff, or Board of Directors. The author of a message is solely responsibility for its content. Information posted on WFH social networks and platforms should never be a substitute for individualized professional medical advice, even when the author has medical qualifications or is considered an authority. Information posted to a discussion group should not be used to diagnose or treat a specific health problem without consulting a qualified healthcare professional. The WFH recommends that you contact your physician or local treatment centre if you have any individual questions or concerns.

References and links to other websites or references to other organizations, products, services, or publications do not constitute endorsement or approval by the WFH. The WFH is not responsible and assumes no liability for the content of any linked websites.

Fraud Alert

Unauthorized solicitations – Warning

The WFH has been made aware of various correspondences—circulated via e-mail and telephone—coming from individuals impersonating WFH staff or falsely stating that they are associated with the WFH. These correspondences, which may seek to obtain money using the name of someone affiliated with the WFH, are fraudulent and come from outside of our organization.

If you receive a suspicious solicitation, exercise extreme caution. In the case of an email, look at the email address to see if it looks suspicious (for example, all WFH emails come from @wfh.org).

We are asking you to remain vigilant, and if you have any doubts about the correspondence, please forward the email to the WFH at [email protected] or call +1 514-875-7944.