news-AGS-2019-Nov2020

Report on the Annual Global Survey 2019 now available

The Report on the World Federation of Hemophilia (WFH) Annual Global Survey (AGS) 2019 is now available online.

Also available in: Français Español

The Report on the World Federation of Hemophilia (WFH) Annual Global Survey (AGS) 2019 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.

The national member organizations (NMOs) who contributed to the report faced many data collection challenges due to the COVID-19 pandemic. However, this year’s survey nevertheless had a high response rate of 82% and includes data from 115 countries, with Trinidad and Tobago and Kuwait as our newest respondents to be included in the survey.

The report includes data on over 324,000 patients: 195,263 people with hemophilia (PWH), 80,302 people with VWD, and 49,083 people with other rare bleeding disorders.

The median factor VIII and factor IX use per capita were calculated to be 1.058 and 0.155 IU respectively.

This year the report also includes a new analysis illustrating the global inequities in diagnosis and patient identification. Using the new prevalence of hemophilia, the number of expected PWH for each country and region was calculated—making the report even more comprehensive than ever. The data are available for the hemophilia community to reinforce the importance of early diagnosis.

The AGS continues to improve and remains as one of the key resources for the bleeding disorders community. The use of this data can lead to better research, advocacy and policy-making decisions globally. The WFH is thankful for the participation and support of all countries who have continuously supported our data collection efforts.

To access the WFH Annual Global Survey (AGS) 2019 please click here. Supplementary charts and graphs are available online 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.