News

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….

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…

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…

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…

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…

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…

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…

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…

All Your Choices in One Place
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…

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…

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…

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…

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…

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…

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…

Michigan Study Explores Gene Therapy Understanding in Hemophilia Community
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Participate in Groundbreaking Michigan Study on Gene Therapy Awareness in the Hemophilia Community The National Bleeding Disorders Foundation is supporting an important…

NBDF’s Patient Assistance Programs (PAPs) Listing Updated!
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation’s (NBDF) HANDI program has updated the online Patient Assistance Programs (PAPs) listing. The PAPs resource page encompasses programs designed to…

FDA Approves Subcutaneous Therapy for Hemophilia Patients with Inhibitors
Industry News & Research
The U.S. Food and Drug Administration (FDA) has approved Alhemo (concizumab-mtci) for routine prophylaxis to prevent or reduce the frequency of bleeding…

Global Experts Create Blueprint for Future VWD Research
Industry News & Research
In a significant advancement for von Willebrand Disease (VWD) research and treatment, an international team of experts, including patients, clinicians, and researchers,…

Investigational Sub-Q von Willebrand Disease Therapy Put on Fast Track
Industry News & Research
The U.S. Food and Drug Administration (FDA) has granted Fast Track designation to the investigational von Willebrand disease (VWD) therapy VGA039. The…

Clinical Practice and Hemophilia Gene Therapy the Focus of New Accredited Activity
Gene Therapy, Industry News & Research
The National Bleeding Disorders Foundation (NBDF) is excited to announce a new online, enduring, and accredited educational activity available to healthcare providers….

Washington Days 2025, NBDF’s Annual Advocacy Event, is March 5-7
Advocacy & Legislation, Industry News & Research
Are you ready to advocate for the bleeding disorders community? Join us at Washington Days 2025 for a powerful and impactful experience. Learn…

Learn About the T.H.R.I.V.E. Campaign
Health and Well Being, Industry News & Research
The T.H.R.I.V.E. campaign is an initiative to educate individuals with bleeding disorders and their support networks about six key steps for leading…

How to Protect Yourself from Fractures
Health and Well Being, Industry News & Research
Bone health isn’t necessarily top of mind — especially at younger ages — but it should be. One study revealed that people with…