NBDF’s inaugural Research Roundtable was held in Washington, D.C. on October 15-16, 2025. The meeting brought together lived experience experts (LEEs), researchers, healthcare providers, and industry leaders in a pre-competitive, product-agnostic…
Web-based registries are essential tools for gathering patient-reported information for research purposes. The National Bleeding Disorders Foundation recognised and responded to the imperative to actively include persons with inheritable bleeding…
Gene therapy has shown promise in clinical trials for patients with haemophilia, but patient preference studies have focused on factor replacement treatments.Read More
This study will collect data from interviews with women who have moderate or severe hemophilia or another congenital bleeding disorder. Participants will be asked to express the impact that a congenital bleeding disorder has on the development and…
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The holiday season is a great time to recognize the many dedicated caregivers in the bleeding disorders community. This edition of the Resource Roundup (RR) includes resources that address everyday challenges universal to all caregivers as well as…
NBDF is excited to announce that its Facts About Inhibitors booklet is now available in an Arabic language version. Using easy-to-understand language, this publication includes important information about how inhibitors develop in people with…
Star Therapeutics has released interim data from its ongoing phase 1/2 clinical trial of VGA039, an investigational therapy von Willebrand disease (VWD). NBDF is sharing this research update to ensure the bleeding disorders community has timely,…
Merika Hawes, MSW, LMSW, is the Hemophilia Social Worker at the Augusta University Pediatric Hemophilia Treatment Center at the Children’s Hospital of Georgia in Augusta, Georgia. Since 2021, she has worked with children, teens, and…
Arthur Long, DPT, OCS is a board-certified orthopedic physical therapy specialist and faculty member at the University of California, San Francisco (UCSF). He teaches orthopedics in the UCSF Doctor of Physical Therapy program…