News
Wisconsin All Copays Count Coalition Urges Action on Cole’s Act
Advocacy & Legislation, Living with a Bleeding Disorder
Oregon, North Dakota, Indiana, and Vermont join 19 other states that have passed copay accumulator bans. As the national momentum to protect…
Get with the Beats!
Health and Well Being, Living with a Bleeding Disorder
2025 Beats Music Application – Nashville, TN (July 16, 2025 – July 20, 2025) – Apply by June 4. Travel scholarships available!…
How Do You Best Learn About Your Bleeding Disorder?
Health and Well Being, Living with a Bleeding Disorder
There are many ways to learn, and to learn about your bleeding disorder. Our society, though, is biased toward visual learning, because…
Changing Policies Mean Take Advocacy Action Now!
Advocacy & Legislation, Living with a Bleeding Disorder
The Coalition for Hemophilia B has created an excellent Action Sheet to help give you ideas and action items to help protect…
Know Your Patient Assistance Programs
Advocacy & Legislation, Health and Well Being, Living with a Bleeding Disorder
There are a great range of programs that offer financial assistance and factor for qualified patients. Co-pay assistance, free factor, scholarships and…
Staying Fit When You Have a Bleeding Disorder
Health and Well Being, Living with a Bleeding Disorder
Physical activity is beneficial for all kinds of reasons. Learn about ways you can stay fit safely and thrive by living a…
Ask a Social Worker: How Can People with a Bleeding Disorder Find an Inpatient Substance Use Treatment Program?
Health and Well Being, Living with a Bleeding Disorder
A national coalition formed in 2022 can help you get the care you need for a substance use disorder or mental health…
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 by Takeda
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 by Sanofi
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
by: Danielle Leitner Baxter We need your help! Contact your representatives today! On April 1, the US Department of Health and Human…
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…