Gene Therapy for Hemophilia A: A Mixed Methods Study of Patient Preferences and Shared Decision-Making
As gene therapies for hemophilia are incorporated into clinical practice, shared decision-making (SDM) is recommended for implementation. The data in this study highlights the utility of a SDM tool for hemophilia gene therapy and key information…
Glanzmann Thrombasthenia beyond bleeding: Insights from lived experience experts
Glanzmann Thrombasthenia (GT) is a rare inherited platelet disorder caused by a qualitative or quantitative defect of the glycoprotein IIb/IIIa complex. The bleeding phenotype, psychosocial impact, and patient perspectives in GT remain inadequately…
Pain Attitudes and Pain Outcomes among People with Bleeding Disorders: Results from Community Voices in Research
Current pain treatment practices have not adequately addressed pain in people with bleeding disorders. Strong evidence of a relationship between pain attitudes and pain outcomes was presented. No other studies report on pain attitudes in people with…
The relationship between different pain measures, depression, and social support and race and ethnicity in persons with hemophilia
Disparities in healthcare and health outcomes within minoritized and marginalized populations have been extensively documented in the literature. However, despite growing evidence that race/ethnicity may have a negative impact, few studies in BDs…
NBDF Celebrates the Appointment of Leonard Valentino, MD as President of WFH USA
The National Bleeding Disorders Foundation (NBDF) proudly announces that our former President and CEO, Leonard A. Valentino, MD, has been appointed as President of WFH USA. This appointment represents an exciting expansion of Doctor Valentino's…
NBDF Joins Top Tier of Nonprofit Excellence
The National Bleeding Disorders Foundation (NBDF) is proud to announce its achievement of the prestigious Platinum Seal of Transparency from Candid (formerly known as Guidestar), placing NBDF among the top 0.1% of U.S. charities recognized for…
Susan Strozewski
NBDF Welcomes New Board Members for 2025
The National Bleeding Disorders Foundation (NBDF) is pleased to announce the appointment of three new distinguished members to its Board of Directors, effective January 1, 2025. Additionally, we are delighted to announce the re-election of Susan…
Investigational Sub-Q Von Willebrand Disease Therapy Put on Fast Track
The U.S. Food and Drug Administration (FDA) has granted fast track designation to the investigational von Willebrand disease (VWD) therapy VGA039. The therapy is being developed by Star Therapeutics, a biotechnology company based in San Francisco,…
Greater Los Angeles Wildfires: Community Support
Our hearts are with everyone affected by the devastating wildfires sweeping through Greater Los Angeles. The National Bleeding Disorders Foundation (NBDF) is actively working with local chapter leaders to support our community during this crisis. We…