Chapter Challenge winner representatives
Chapter Challenge winner representatives.

WFH and WFH USA work on display at NBDF Bleeding Disorders Conference

The Bleeding Disorders Conference, held by the National Bleeding Disorders Foundation (NBDF) in Atlanta, Georgia from September 12 to 14, was a success. The WFH participated in the annual conference that brought the bleeding disorders community together to share knowledge, offer support, and advocate for continued progress in care and treatment.

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One of the highlights of the event was the chapter recognition session held during the chapter luncheon. During this session, WFH USA President, Eric Stolte, recognized the enduring commitment of the NBDF Chapters to the global community through the Chapter Challenge. Since its inception in 2016, the Chapter Challenge has raised over $1 million dollars—a testament to the dedication and generosity of our community. Stolte’s remarks underscore the critical role that these funds play in advancing the WFH vision of Treatment for All.

A special recognition was given to the NBDF and Hemophilia of Georgia for their leadership as Founding Champion and Founding Chapter Champion, respectively. Their support of WFH USA has set a powerful example, inspiring other chapters to join the cause and advance the global initiatives of the WFH. Their leadership has not only fueled our fundraising efforts—it has also strengthened the bleeding disorders community’s sense of solidarity.

WFH-affiliated speakers were also present at the event. Dulce Gafner, a 2022 WFH Youth Fellow, and Eliza VanZweden, a 2024 Susan Skinner Memorial Fund Scholar, both gave presentations at the conference centered around giving kids and teens with bleeding disorders the tools they need to effectively manage their condition, especially when going from one age bracket to another.

Several Susan Skinner Memorial Fund (SSMF) Scholars visited the WFH booth to chat with Eric Stolte, President, WFH USA and the WFH team about how the scholarship has helped advance their goals. They talked about their increased engagement with the bleeding disorders community and their desire to continue supporting women’s leadership worldwide. The WFH is also excited to announce that 2024 SSMF scholar Gabi Flores won the NBDF Youth Award of Excellence, which recognizes a young person who has helped increase awareness and understanding within the inheritable blood and bleeding disorders community and the general population.

(Left to right): Eric Stolte, President, WFH USA with Susan Skinner Memorial Fund Scholarship Alumni; Joelle Palmatier (U.S.A, 2016), Shellye Horowitz (U.S.A, 2022), Amanda Brito del Pino Mouro (Uruguay, 2018) and Eliza VanZweden (U.S.A, 2024).
(Left to right): Eric Stolte, President, WFH USA with Susan Skinner Memorial Fund Scholarship Alumni; Joelle Palmatier (U.S.A, 2016), Shellye Horowitz (U.S.A, 2022), Amanda Brito del Pino Mouro (Uruguay, 2018) and Eliza VanZweden (U.S.A, 2024).

The WFH booth gave attendees the opportunity to engage directly with our staff. This interaction allowed conference attendees to gain a deeper understanding of the vital work the WFH does around the world. Our booth was a hub of information and inspiration, fostering connections with those who share our vision of a world where all people with inherited bleeding disorders have access to care, regardless of their type of bleeding disorder, gender, or where they live.

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

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Functional Scales

The outcomes of interest collected by the WBDR include demographic characteristics, clinical and treatment-related outcomes, burden of disease outcomes, and patient-reported outcomes.

The WBDR includes five functional scales as part of its extended data set:

WBDR hemophilia data sets

WBDR Minimal Data Set

The WBDR Minimal Data Set (MDS) is a set of data on demographics, diagnosis, symptoms and treatment which are collected on patients participating in the WBDR.

WBDR Extended Data Set

The WBDR Extended Data Set (EDS) is a larger set of data, with more details than the MDS, which includes questions on patient demographics, diagnosis, symptoms, treatment and burden of disease. The EDS can be used by hemophilia treatment centers to collect data on patients participating in the WBDR. The WBDR Extended Data Set (EDS), was added to the database in March 2019.