For Immediate Release PRESS CONTACT: Kyla Clark National Bleeding Disorders Foundation 347-920-0047kclark@bleeding.org NBDF Expands Health Access Initiatives …
The topic of bone health in people with bleeding disorders has received more attention and study in recent years, with reports suggesting that people with hemophilia (PwH) and people with von Willebrand disease (PwVWD) experience higher rates of…
Dear Friends,Yesterday, the landscape of public health shifted in ways that deeply affect the bleeding disorders community. As part of a broader restructuring at the U.S. Department of Health and Human Services (HHS), nearly all staff within the CDC…
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…
The Community Voices in Research registry is community powered and collects information about what it is like to live with a bleeding disorder from those who know these conditions the best: lived experience experts. This research describes a sample…
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