News

Pain and Joint Problems Drive Higher Depression, Anxiety in People with Hemophilia

Health and Well Being, Industry News & Research

According to a study published in Haemophilia, patients with hemophilia face heightened risks of depression and anxiety due to pain and joint issues,…

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Alhemo Approved for Patients 12 and Older

Industry News & Research

The U.S. Food and Drug Administration (FDA) has approved Alhemo (concizumab-mtci) injection (60 mg, 150 mg, or 300 mg) as a once-daily…

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First Participant Dosed in BeCoMe-9 Trial of BE-101

Industry News & Research

Be Biopharma announced that a first participant was dosed in the BeCoMe-9 Trial of BE-101for hemophilia B. BE-101 is a first-in-class, engineered…

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Protecting Access to Care

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

Twenty-one states have filed suit to block implementation of the Marketplace Integrity Rule, arguing that it will create barriers to coverage and…

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Women Bleed Too: Closing Gaps in Bleeding Disorder Care

Industry News & Research, Women with Bleeding Disorders

Women and girls with bleeding disorders face delays in diagnosis and care. Learn how research and community voices are changing the future…

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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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