News

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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Learn About NBDF’s “My Life, Our Future” Program

Health and Well Being, Living with a Bleeding Disorder

“My Life, Our Future” (MLOF) is a collaborative effort that seeks to advance understanding of hemophilia by developing the MLOF Research Repository, a scientific resource….

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3 Critical Conversations to Have with Your HTC Social Worker

Health and Well Being, Living with a Bleeding Disorder

Opening up about insurance issues, loneliness, and other challenges can benefit you and others in the bleeding disorders community. Here are three…

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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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New Federal Policies and Your Coverage

Advocacy & Legislation, Living with a Bleeding Disorder

Read Hemophilia Federation of America’s excellent “Word from Washington” about how new policies can affect you and overage for your medical care….

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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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Bleeding Disorders Substance Use & Mental Health Access Coalition

Health and Well Being

From Vision to Victory: BD SUMHAC’s Year-in-Review Authored by: The BD SUMHAC Team Download the summary of the Bleeding Disorders Substance Use…

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Coming in 2025! La Kelley Communications’ Flagship Book Raising a Child with Hemophilia Will Be Published Mid-2025

Health and Well Being, Living with a Bleeding Disorder

First published in 1990, this sixth edition is updated to include new medical treatments, resources and up-to-date advice from parents. Stay tuned…

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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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Calling all Camp Klotty Pine Campers – New and Returning!

GLHF News

Save-the-Date(s): Camp Klotty Pine Open House: Sunday, May 4, 1-4 pmCamp Klotty Pine: Sunday, August 3 to Friday, August Register Today! We’re…

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Together We Advocate. Together We Make a Difference.

Advocacy & Legislation, GLHF News

Advocates from across Wisconsin have been using their voices, making a lasting impact, and driving change for access to healthcare in both…

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Join us for a Bloody Good Time on April 13 for our 13th Annual Milwaukee’s Best Bloody

GLHF News

DRINK LOCAL. GIVE LOCAL. Get your tickets today! Milwaukee’s Best Bloody, Sunday, April 13, from 11:30 am to 2:30 pm at Wisconsin State…

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Read, Learn, Act!

Advocacy & Legislation, Living with a Bleeding Disorder

The year has already seen incredible changes with a new presidential administration and over 45 new executive orders. A great article explores…

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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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Watch NBDF’s Testimony on Key Prescription Drug Affordability Bill!

Advocacy & Legislation, Living with a Bleeding Disorder

Want to hear firsthand how NBDF is advocating for the bleeding disorders community? Watch the video of Bill Robie, NBDF’s Senior Director…

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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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Support for Young Adults Navigating Higher Education

Health and Well Being, Living with a Bleeding Disorder

Transitioning to higher education is an exciting but potentially challenging time for everyone. Don’t fret, we are here to help! This new…

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How to Navigate Cold and Flu Season with a Bleeding Disorder

Health and Well Being, Living with a Bleeding Disorder

Winter is the peak season for sneezin’ — and the congestion, coughing, and achiness that often come with colds and flu. Here’s what…

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