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…

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….

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….

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…

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…

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….

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…

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…

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…

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…

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…

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…

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…

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…

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 – 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…

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…

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…

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…

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…