Report on the 2023 Annual Global Survey (AGS) has been published

Just published: Annual Global Survey 2023

The World Federation of Hemophilia (WFH) is proud to announce that the Report on the 2023 Annual Global Survey (AGS) has been published. The AGS is a yearly cross-sectional survey of WFH national member organizations (NMOs) that includes country-level demographic and treatment-related data on people with hemophilia (PWH), von Willebrand disease (VWD), rare factor deficiencies, and inherited platelet disorders. This edition includes many rich insights on the state of the global inherited bleeding disorders community.

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The 2023 Annual Global Survey (AGS) highlights the significant progress made in care for those living with bleeding disorders. AGS data can be used by national member organizations (NMOs) and other stakeholders to effectively advocate with governments to improve care for bleeding disorders communities.

In 2023, the Annual Global Survey includes several encouraging developments:

The report also includes new analyses and figures showcasing the adoption of conversion factors to illustrate the impact of new therapies, including extended half-life (EHL) clotting factor concentrates and emicizumab. Factor usage (international units or IU) per capita has been used for decades to compare hemophilia care resources across countries. However, the introduction of EHL clotting factor concentrates for hemophilia A and B, and emicizumab prophylaxis for hemophilia A has complicated the monitoring of usage trends as they are measured in different units. To assess trends in care and the impact of EHL products and emicizumab prophylaxis, a conversion factor was established and has been applied in the 2023 report, showing the IU per capita with standard half-life (SHL), EHL and emicizumab as a single, harmonized metric. The aim of this analysis is to calculate a combined value encompassing all treatments (including EHL and non-factor therapies), to assess overall treatment product consumption and to facilitate analysis of treatment progression across different countries, regions and economic categories.

The WFH expresses its gratitude for the support and participation of all NMOs in our data collection efforts.

To read the WFH Annual Global Survey 2023, please click here. Supplementary charts and graphs are available here. For more information about the Annual Global Survey, click here or contact us at [email protected].

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

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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.

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