Evidence-based Advocacy

Data collected through the WFH Annual Global Survey and the WFH World Bleeding Disorders Registry are used to create global and country specific reports, charts, infographics, and tools that will help strengthen advocacy messages.

Infographics, based on data from the latest Annual Global Survey and the World Bleeding Disorders Registry are available for download as an image, a PDF or as slides and can be used for presentations and advocacy work.

The WFH has developed a user-friendly data visualization system, which includes real-time, customizable queries. This system allows the user to explore and compare recent and historical data to suit all reporting, research and advocacy needs.

View and download graphs of Annual Global Survey data developed using our new data collection system.

WFH AGS mini reports are advocacy tools that provide more in-depth perspective and context to Annual Global Survey data.

Peer-reviewed publications on global data and patient registries relevant to hemophilia and other bleeding disorders are also available.

Stonebraker JS, Bolton-Maggs PHB, Brooker M, Evatt B, Iorio A, Makris M, O'Mahony B, Skinner MW, Coffin D, Pierce GF, Tootoonchian E, The World Federation of Hemophilia Annual Global Survey 1999‐2018. Haemophilia. 2020 Jul;26(4):591-600. doi: 10.1111/hae.14012. Epub 2020 Jun 4.

Iorio A, Stonebraker JS, Chambost H, Makris M, Coffin D, Herr C, Germini F; Data and Demographics Committee of the World Federation of Hemophilia, Establishing the Prevalence and Prevalence at Birth of Hemophilia in Males: A Meta-analytic Approach Using National Registries. Ann Intern Med. 2019 Oct 15;171(8):540-546. doi: 10.7326/M19-1208. Epub 2019 Sep 10.

Coffin D, Herr C, O'Hara J, Diop S, Hollingsworth R, Srivastava A, Lillicrap D, van den Berg HM, Iorio A, Pierce GF. World bleeding disorders registry: The pilot study. Haemophilia. 2018 Feb;e113-e116.

Iorio, A., Stonebraker, J. S., Brooker, M., Soucie, J. M. on behalf of the Data and Demographics Committee of the World Federation of Hemophilia (2017), Measuring the quality of haemophilia care across different settings: a set of performance indicators derived from demographics data. Haemophilia. 2017 Jan;23(1):e1-e7. doi: 10.1111/hae.13127. Epub 2016 Dec 8.

Charitable solicitations for the common purpose of WFH and WFH USA within the U.S. are conducted through WFH USA, a 501(c)3 affiliated entity.