News

Research in Children and Adolescents with Inherited Bleeding Disorders

Industry News & Research, Living with a Bleeding Disorder

This session of the Research Journal Club explores the latest advances and challenges in research focused on children and adolescents with inherited…

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NBDF Statement on Passage of HR 1 – “One Big Beautiful Bill Act”

Advocacy & Legislation, Health and Well Being, Industry News & Research

This week, Congress passed a bill, the “One Big Beautiful Bill Act,” that will have widespread impacts on the bleeding disorders community…

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Pfizer Announces Phase 3 Trial Results for Hemophilia/Inhibitor Therapy

Industry News & Research

HYMPAVZI™ (marstacimab-hncq) is FDA-approved for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and pediatric individuals 12…

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Literature Review Reaffirms Clinical Relevance of Von Willebrand Disease Guidelines

Industry News & Research

A comprehensive literature review was conducted to ensure that the von Willebrand disease guidelines were still clinically appropriate and informed by the…

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National Research Blueprint Becomes Bleeding Disorders Research Collaborative

Industry News & Research

New name reflects community leadership and a shift from planning to action. The National Bleeding Disorders Foundation’s (NBDF) National Research Blueprint (NRB), launched…

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Be Biopharma Announces First Hemophilia Patient Dosed with New Cell Therapy

Industry News & Research

BE-101 is engineered to insert the human factor IX (FIX) gene into primary human B cells and initiate the continuous production of…

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Beware Healthcare

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

The Coalition for Hemophilia B has summarized threats to healthcare from the current administration. What’s at risk? Currently, more than 24 million…

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What’s Next in Bleeding Disorders Care?

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

The National Bleeding Disorders Foundation’s 77th annual Bleeding Disorders Conference will take place from August 21-23, 2025. We hope you join us…

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Congress Needs to Hear from You!

Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

In conjunction with NBDF and other national partners, GLHF encourages you to take action now. Right now, US Senators are debating a…

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Factor X Deficiency: Understanding This Rare Bleeding Disorder

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

Check out this guide to why the condition occurs, how to recognize symptoms, and what you can do to manage it.

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NEJM Publishes Follow-up Data on Hemophilia B Gene Therapy Product

Gene Therapy, Industry News & Research

The New England Journal of Medicine (NEJM) recently published long-term follow up data on patients who have previously received the hemophilia B gene…

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New Paper Features Hemophilia Gene Editing Lexicon

Gene Therapy, Industry News & Research

NBDF, ASGCT, and ISTH publish a new paper offering a standardized lexicon to guide communication on gene editing in hemophilia research and…

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Curious About Clinical Trials for Hemophilia and Other Bleeding Disorders?

Industry News & Research

Learn why these research studies are important for the development and approval of new treatments, and how to find more information.

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Slowdown of Gene Therapy Research Spurs Call to Action

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

Global organizations unite to urge collaborative approaches to reducing barriers to advancement of care. The National Bleeding Disorders Foundation (NBDF) has joined…

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Two Products to be Discontinued by Takeda

Industry News & Research, Living with a Bleeding Disorder

Takeda announced that it will globally discontinue two of its hemophilia A treatments: Hemofil M, a plasma-derived therapy, and Recombinate, the first…

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Important New Product Launched by Sanofi

Industry News & Research, Living with a Bleeding Disorder

The U.S. FDA has approved Sanofi’s Qfitlia (fitusiran), the first antithrombin-lowering therapy for routine prophylaxis to prevent or reduce the frequency of…

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HHS Terminates Division of Blood Disorders and Public Health Genomics

Advocacy & Legislation, GLHF News, Industry News & Research, Living with a Bleeding Disorder

by: Danielle Leitner Baxter We need your help! Contact your representatives today! On April 1, the US Department of Health and Human…

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Register for the Wisconsin Bleeding Disorders Conference by May 1!

Advocacy & Legislation, GLHF News, Industry News & Research, Living with a Bleeding Disorder

Whether you’re new to the bleeding disorders community or have been a part of it for years, GLHF’s Wisconsin Bleeding Disorders Conference…

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NBDF Enhances Health Access with Strategic Department Expansion

Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder

NBDF Expands Health Access Initiatives Through Strategic Department Evolution Foundation Continues Mission Alignment with Enhanced Focus on Health Access, and Innovation to Better Serve Growing…

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CDC Changes Affect Bleeding Disorders Community

Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

A Message from Phil Gattone, NBDF President and CEO Major restructuring at HHS has placed nearly all CDC Blood Disorders Division staff…

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New Paper Looks at Bone Health Assessment in Bleeding Disorders

Industry News & Research

A newly published journal article examined current practices of HTCs for screening and assessing bone health in people with hemophilia and von…

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FDA Approves Qfitlia™ – New Treatment Option for Hemophilia A & B

Industry News & Research, Living with a Bleeding Disorder

The FDA has approved Sanofi’s Qfitlia™ (fitusiran), a new subcutaneous therapy for people with hemophilia A or B, with or without inhibitors….

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The Bleeding Disorders Community Needs Your Help to Prevent Cuts to Federal Health Programs

Advocacy & Legislation, GLHF News, Industry News & Research

Earlier this week, the Trump Administration announced drastic changes and reductions to the federal health programs that support the bleeding disorders community….

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A Gene Therapy Discontinued

Advocacy & Legislation, Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

Less than a year after FDA approval, Beqvez, a gene therapy for hemophilia B, has been discontinued. Manufactured by Pfizer, the one-time…

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