The U.S. Food and Drug Administration (FDA) recently approved Qfitlia™ (fitusiran) for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adult and pediatric patients 12 years of age and older with hemophilia A or…
Your unique lived experience and contributions to CVR are helping researchers develop new research questions and discover new information to improve the lives of those within the bleeding disorders community. This page outlines summaries of some of…
The NBDF Research Roundtable brings together key stakeholders to address current challenges in clinical trial design for inheritable bleeding disorders (BDs). In a pre-competitive product agnostic environment, the Research Roundtable convenes lived…
Federal: Washington Days On March 6, over 400 advocates from the bleeding disorders community were in Washington, DC to meet with their legislators and their staff about issues important to the bleeding…
This analysis aimed to describe the time from symptom onset to diagnosis (TTD) by birth sex and bleeding disorder (BD) type, using self-reported data from Community Voices in Research (CVR), a community-based registry supported by National Bleeding…
Describe the self-reported comorbidities (SRC) in PWBD, using data from Community Voices in Research (CVR), a registry aimed at collecting the experience of persons affected by these disorders and supported by National Bleeding Disorders Foundation.…
For inquiries, contact Samantha Carlson, LMSW, Director of Research: scarlson@bleeding.orgLearn More
We need your help again! Earlier this week, the Administration announced drastic changes and reductions to the federal health programs that support the bleeding disorders community. We talked about the importance of these…
Join us for an exclusive look at the latest breakthroughs in women's bleeding and thrombotic disorders research. In this interactive session, we bring together experienced researchers, new research fellows, and lived experience experts (LEEs) to…