News

Government Relations Update

Advocacy & Legislation, Industry News & Research, Living with a Bleeding Disorder

Good news for the bleeding disorders community in the House of Representative’s FY26 Labor, Health and Human Services appropriations bill, which included…

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NBDF’s Commitment to Shared Decision-Making and Evidence-Based Access in Gene Therapy

Gene Therapy, Industry News & Research

The current coverage environment can create challenges for individuals seeking to explore gene therapy as a potential treatment option, as well as…

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Honoring Dr. Lynn Malec – A Distinguished Clinician, Research and Advocate for the Bleeding Disorders Community

Advocacy & Legislation, Gene Therapy, GLHF News, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

Great Lakes Hemophilia Foundation (GLHF) grieves the recent loss of Dr. Lynn Malec, a beloved Wisconsin Hematologist. Her life and work profoundly…

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These Dietary Supplements Can Be Dangerous

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

Certain common “natural” remedies can interfere with your body’s ability to clot. Source: National Bleeding Disorders Foundation, HemAware, February 2026

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NBDF and WFH Statement on Severe Adverse Event with Marstacimab Rebalancing Agent for Hemophilia

Industry News & Research

(Editors note: January 22, 2026. Following publication of this joint statement from the National Bleeding Disorders Foundation (NBDF) and the World Federation…

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Government Relations Update: House Reintroduces HELP Copays Act

Industry News & Research

Good news: the House has reintroduced the HELP Copays Act, aimed at ending copay accumulator adjustor programs and copay maximizers. Learn how…

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Statement on Severe Adverse Event with Marstacimab

Industry News & Research

The National Bleeding Disorders Foundation (NBDF) has joined with World Federation of Hemophilia (WFH) with issuing a joint statement on a severe…

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NBDF Awards Research Grants

Industry News & Research, Living with a Bleeding Disorder

NBDF is proud to announce the 2025 recipients of the Judith Graham Pool Postdoctoral Research Fellowship, the NEHA Postdoctoral Research Fellowship, the…

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Result from Glanzmann Thrombasthenia Therapy Clinical Trial

Industry News & Research

Results from a phase 2 clinical trial of an investigational therapy for the treatment for Glanzmann thrombasthenia were announced by Hemab Therapeutics….

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Government Relations Update

Advocacy & Legislation, Industry News & Research

A look inside the legislation to reopen the government after the fall shutdown, a new Medicaid drug pricing model, and changes at…

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Interim Data from Sub-Q Therapy for VWD

Health and Well Being, Industry News & Research

Star Therapuetics has shared an update on its ongoing clinical trial of VGA039, an investigational therapy for von Willebrand disease. The therapy…

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HELP Copays Act Reintroduced in Congress

Advocacy & Legislation, Industry News & Research

The bill aims to require insurers and pharmacy benefits managers to count all payments, including copay assistance, towards patients’ annual deductibles. Learn…

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Five Year Hemgenix® Trial Data Published

Industry News & Research

CSL Behring has published five years of data from their clinical trial of Hemgenix®, a gene therapy product for the treatment of…

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Transforming Bleeding Disorders Research Through Community Collaboration

Industry News & Research

This video showcases the Bleeding Disorders Research Collaborative (BDRC), a groundbreaking initiative led by the National Bleeding Disorders Foundation to transform research…

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NBDF Launches Educate to Elevate

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

The National Bleeding Disorders Foundation (NBDF) is launching Educate to Elevate, a multi-year initiative to raise public awareness, educate communities, and improve healthcare…

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GLHF Celebrated for Supporting Research

GLHF News, Industry News & Research

At the 2025 Chapter Leadership Summit (CLS), the National Bleeding Disorders Foundation (NBDF) celebrated the generosity of chapter contributions to research.  For…

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New Recommendations from NBDF’s Medical and Scientific Advisory Council (MASAC)

Industry News & Research

The three new recommendations concern off-label use for emicizumab for acquired hemophilia A; the use of anti-tissue factor pathway Inhibitors in hemophilia;…

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BioMarin Announces Out-licensing Plan for ROCTAVIAN

Industry News & Research

BioMarin has decided to pursue allowing another company to market and sell ROCTAVIAN, its one-time gene therapy used to treat adults with…

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GLHF Hosts Educational Program About Hemlibra December 9!

GLHF News, Industry News & Research

Join us for an educational program about Hemlibra at GLHF’s new office, 12700 W. Bluemound Rd., Suite 130, Elm Grove, on Tuesday,…

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VWD Medicine Now Indicated for Prophy

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

The U.S. FDA approved Takeda’s supplemental Biologics License Application (sBLA) for Von Vendi, to expand its indication for routine prophylaxis to reduce…

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World Federation Reports on Progress

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder

Nearly 400 people with hemophilia joined gene therapy trials, and shared their data to help future generations. The WFH Gene Therapy Registry…

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Novo Nordisk Applies for FDA Approval for Mim8

Industry News & Research

Mim8 (denecimig) is an injection therapy for preventing bleeds in people with hemophilia A with or without inhibitors. Antibody-based, Mim8 is designed…

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Gene Therapy: The Positive

Gene Therapy, Industry News & Research, Living with a Bleeding Disorder

Gene therapy has received some doubtful news: not about its effectiveness, but about cost and slow acceptance. Here’s some good news: two…

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Pilot Study Highlights Health Equity Gaps in Bleeding Disorders Community

Industry News & Research, Living with a Bleeding Disorder

A new pilot study reveals how social determinants of health disproportionately affect underserved groups — including Black, Indigenous, and Hispanic/Latino individuals —…

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