News

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

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

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

We need your help! Contact your representatives today! On April 1, the US Department of Health and Human Services (HHS) issued termination…

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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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NBDF’s New Video Series: Voices for Policy Change

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

“Voices for Policy Change” is an on-line resource designed to educate, empower and mobilize on important legislative issues related to bleeding disorders…

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Leadership: Anger, Respect, and Results

Industry News & Research, Living with a Bleeding Disorder

by: Laurie Kelley March is hemophilia awareness month and the recent upheaval over leadership in this country has me thinking about leadership…

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Pfizer Halts Hemophilia B Gene Therapy

Industry News & Research

In a surprising development, Pfizer has discontinued Beqvez™, their hemophilia B gene therapy, despite FDA approval just last spring. The company cited…

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First von Willebrand Disease Patient Dosed with Investigational Sub-Q Therapy

Industry News & Research

Hemab Therapeutics has begun dosing in their phase 1/2 clinical trial of HMB-002, a subcutaneous prophylactic therapy designed for all types of…

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Takeda Announces Discontinuation of Two of its Hemophilia Treatments: HEMOFIL® M and RECOMBINATE®

Industry News & Research

On March 18, 2025, Takeda Pharmaceuticals announced it will globally discontinue two of its hemophilia treatments: HEMOFIL® M [Antihemophilic Factor (Human), Method…

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Rest in Peace, First Lady

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

The hemophilia community mourns the passing of Suzanne Massie, age 94, arguably the “first lady” of hemophilia. She and her former husband…

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All Your Choices in One Place – Factor Chart Outlines Choices

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

Download LA Kelley Communications’ updated Factor Chart to see how many choices you may have, what might be right for you and…

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A Message from the Heart of NBDF

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

Our Commitment to Health Equity & Inclusive Care At NBDF, our mission is clear—every person and family affected by bleeding disorders deserves…

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Clinical Practice and Hemophilia Gene Therapy the Focus of New Accredited Activity

Industry News & Research, Living with a Bleeding Disorder

The U.S. Food and Drug Administration (FDA) has granted Fast Track designation to the investigational von Willebrand disease (VWD) therapy VGA039. The…

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FDA Approves New Non-Opioid Treatment for Pain

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

The U.S. Food and Drug Administration (FDA) recently approved Journavx™ (suzetrigine) 50 milligram oral tablets, a first-in-class non-opioid analgesic developed to treat…

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Watch the 2024 Awards of Excellence Ceremony at the National Bleeding Disorders Foundation Annual Conference

Health and Well Being, Industry News & Research

This inspiring event celebrates the exceptional individuals and organizations making a lasting impact in the bleeding disorders community. Trailblazing healthcare professionals and dedicated advocates were…

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Ever Wonder Why Hemophilia B Was Once Called Christmas Disease?  

Industry News & Research, Living with a Bleeding Disorder

Did You Know? The name for a well-known bleeding disorder has a surprising origin tied to a 5-year-old boy from Canada. Learn why…

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Sanofi Announces Positive Data for Its Investigational ITP Therapy

Industry News & Research

ITP is a rare autoimmune disorder that causes a significant reduction in platelets, which are necessary for clotting. Sanofi has announced positive…

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