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…

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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!…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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…

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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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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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