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…
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…
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…
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
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…
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…
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…
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…
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….
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…
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…
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…
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…
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…
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…
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…
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;…
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…
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,…
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…
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…
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…
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…
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 —…