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Identification of WGBDs supported through multiple efforts

The World Federation of Hemophilia (WFH) estimates that over 75% of expected people living with hemophilia worldwide have not yet been identified and diagnosed. Identification and diagnosis rates are even lower for women with bleeding disorders, including those with hemophilia, who have historically only been seen as carriers. Without accurate diagnosis, these individuals have no chance of accessing adequate treatment and care. For that reason, the WFH has spearheaded several activities to increase the identification of women and girls with bleeding disorders (WGBDs). Last year saw the WFH get several “wins” for this vulnerable group in the global bleeding disorders community.

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In 2023, the WFH helped to improve the identification of WGBDs through several endeavours. A collaboration with the Women’s Committee of the Argentinean Foundation of Hemophilia helped triple the number of WGBDs in the Argentinean Bleeding Disorders Registry (HArgentina) to over 300 people in just two years. This achievement was made possible thanks to various awareness campaigns, workshops, and the inaugural national meeting of women with bleeding disorders. The WFH Development Grant Program and the WFH Path to Access to Care and Treatment (PACT) Program also played a significant part in supporting WGBD—as well as the general bleeding disorders community—in Argentina in 2023.

 

Another key WFH-led endeavour for supporting the identification of WGBDs was the addition of a module to the WFH World Bleeding Disorders Registry (WBDR) for collecting data on people with VWD (PwVWD). During the first 12 months of 2023, over 1,000 PwVWD—including over 500 women and girls—from 46 HTCs in 22 countries have been included in the WBDR. These data will be valuable not only for clinical management, but also for helping to identify gaps in care around diagnosis and treatment availability. The data will also act as an essential building block for advocacy initiatives for WGBDs.

To find out more about the WFH PACT Program, click here. To find out more about the WFH Development Grant Program, click here. To find out more about the WFH WBDR, click here.

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.

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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.