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…
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…
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…
Raising a Child with Hemophilia is Back!
Health and Well Being, Living with a Bleeding Disorder
LA Kelley Communications’ flagship book Raising a Child with Hemophilia is available to download free as a PDF from its website. First…
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…
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…
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…
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…
Women & Girls Bleed Too
Living with a Bleeding Disorder, Women with Bleeding Disorders
This year’s World Hemophilia Day, which was held April 17, focused on “Access for All: Women and Girls Bleed Too” — tackling…
New Scholarships for Students with Inherited Bleeding Disorders
Advocacy & Legislation, Living with a Bleeding Disorder
Every year the Neil Frick Resource Center (NFRC) (formerly HANDI) assembles a list of post-secondary educational scholarships that are available to students…
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…
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…
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…
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…