Vietnam article

WFH Humanitarian Aid Program improves quality of life in Vietnam

In 2020, the World Federation of Hemophilia (WFH) Humanitarian Aid Program provided over 1.1 million IUs of donated factor, and over 132,000 mg of non-factor replacement therapy to hemophilia treatment centres (HTCs) in Vietnam.

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In 2020, the World Federation of Hemophilia (WFH) Humanitarian Aid Program provided over 1.1 million IUs of donated factor, and over 132,000 mg of non-factor replacement therapy to hemophilia treatment centres (HTCs) in Vietnam. This factor was used for acute bleeds, and also for prophylactic treatment. The result of these efforts is that children and adults in the country now enjoy a better quality of life. Kids are going back to school, and adults—and the parents of children with a bleedings disorder—are going back to work to help support their families.

“A simple thank you would not be enough to express all our gratitude for the support of the WFH and the WFH Humanitarian Aid Program,” says Bach Quoc Khanh, MD, PhD, Director of the National Institute of Hematology and Blood Transfusion in Hanoi. “On behalf of hemophilia patients and all the medical staff working in hemophilia care, we would like to send out our warmest heartfelt thanks for the support of the WFH.”

The video at the top of this page tells the story of several people with bleeding disorders (PWBDs) whose lives were changed for the better thanks to the Program. You’ll hear the story of Bao, who had so many bleeds that his grandmother feared that he would eventually have to use crutches or even a wheelchair to move around. Instead, he received knee-replacement surgery and can walk on his own. You’ll also hear the story of Duy Anh Nguyen, who would miss school because of bleeds and was afraid of playing for fear that he might hurt himself. In his case, prophylaxis has literally transformed his life. To watch the video, click on the player above, or watch it on YouTube.

To find out more about the WFH Humanitarian Aid Program, click here.

About the WFH Humanitarian Aid Program

The WFH Humanitarian Aid Program improves the lack of access to care and treatment by providing much-needed support for people with inherited bleeding disorders in developing countries. By providing patients with a more predictable and sustainable flow of humanitarian aid donations, the WFH Humanitarian Aid Program makes it possible for patients to receive consistent and reliable access to treatment and care. None of this would be possible without the generous support of Sanofi Genzyme and Sobi, our Founding Visionary Contributors; Bayer and Roche, our Visionary Contributors; Grifols, our Leadership Contributor; and our Contributors, CSL Behring and Takeda.  To learn more about the WFH Humanitarian Aid Program, visit www.treatmentforall.org.

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.