News
2025 World Hemophilia Day Theme Revealed
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
The World Federation of Hemophilia (WFH) announced the 2025 World Hemophilia Day theme: Access for All: Women and Girls Bleed Too. Learn…
FDA Approves Pfizer’s HYMPAVZI for Hemophilia A and B Treatment without Inhibitors
Industry News & Research
Phil Gattone said, “We greatly appreciate Pfizer’s innovative efforts in developing this novel treatment option that addresses some of the ongoing challenges…
Critical Policy Updates: Medicaid Changes, ACA Credits, and More
Advocacy & Legislation, Health and Well Being, Industry News & Research
Dive into NBDF’s August 2024 Government Relations Update for essential information on Medicaid unwinding, ACA premium tax credits, NIH reform, and state-level…
Product Update from NovoNordisk
Industry News & Research
A manufacturing deviation at NovoNordisk’s Danish facility has led to potential underfilling of vials for NovoSeven©, NovoEight©, and Esperoct© – crucial treatments…
VWD: A Glimpse into Tomorrow’s Treatments
Industry News & Research, Living with a Bleeding Disorder
A session on von Willebrand Disease (VWD) at the National Bleeding Disorders Foundation Conference this past summer, highlighted patient-driven treatment advancements and…
Learn More About Gene Therapy
Gene Therapy, Health and Well Being, Industry News & Research
A comprehensive document identifies 50 various publications about gene therapy, much of it accessible for parents and patients. The list includes: FAQs,…
Gene Therapy’s Slow Start
Gene Therapy, Health and Well Being, Industry News & Research
Multimillion-dollar gene therapies were long awaited and desired, but patients were unsure whether insurance would cover the costs. So far, very few patients are…
Attention Clinicians! New Bleeding Disorders Education Available from IHS
Industry News & Research
These new medical-based webinars will speak to key topics relevant to the care of patients with inherited bleeding disorders. NBDF is excited…
New Resource Compilation on Gene Therapy for Hemophilia
Gene Therapy, Industry News & Research
Learn about Gene Therapy for Hemophilia with NBDF’s new resource collection. Find answers, research, and support. The National Bleeding Disorders Foundation (NBDF) is…
NBDF Announces a New Enduring and Accredited Educational Activity Available to Healthcare Providers
Industry News & Research
The National Bleeding Disorders Foundation (NBDF) is pleased to announce a new enduring and accredited educational activity available to healthcare providers. “Exploring…
BioMarin to Narrow Its Commercial Focus for Hemophilia A Gene Therapy
Gene Therapy, Industry News & Research
BioMarin recently announced that they will be changing the scope of their efforts to manufacture and market their gene therapy product ROCTAVIAN.™…
France Gets Gene Therapy
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
by: Patricia Inácio, PhD | July 9, 2024 Hemgenix, the first approved hemophilia B gene therapy, was administered to two patients in France, marking the first time…
Defining Gene Therapy for Patients
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Gene therapy is a welcome treatment for patients, which has been anticipated for decades. But how do parents and patients discuss this…
Planting the Seeds of Leadership
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
NBDF’s National Youth Leadership Institute (NYLI) provides 18-24 year olds in the bleeding disorders community with leadership opportunities to encourage personal growth,…
PTSD Can Affect People with Bleeding Disorders
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
While post-traumatic stress disorder is commonly connected with soldiers, people battling chronic illnesses can have it, too. Here’s how to identify the…
NBDF Unveils THRIVE Campaign: Empowering Individuals with Bleeding Disorders through 6 Essential Steps
Industry News & Research
The National Bleeding Disorders Foundation (NBDF) announces the THRIVE campaign to raise awareness and educate on living healthily with bleeding disorders. The…
Pfizer Presents Marstacimab Trial Updates at EHA Annual Meeting
Industry News & Research
Pfizer recently provided new clinical trial updates for their investigational therapy marstacimab. The data was presented last month at the 2024 annual meeting…
WTAE-TV (PA) Feature: Copay Accumulators – Who Really Benefits?
Industry News & Research, Living with a Bleeding Disorder
In an NBDF interview, Bill Robie, Senior Director of Government Relations, highlighted the ongoing challenges of living with von Willebrand disease. In…
FDA Rare Disease Innovation Hub to Enhance and Advance Outcomes for Patients
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
by: Patrizia Cavazzoni, MD, Director, Center for Drug Evaluation and Research and Peter Marks, MD, PhD, Director, Center for Biologics Evaluation and…
What May Be on the Horizon for Hemophilia Treatment?
Industry News & Research
Gene therapy research continues to evolve. As more information becomes available, the below may help you better understand gene therapy and shared…
In Loving Memory of Neil Frick, NBDF’s Senior Vice President for Medical Programs and Information
GLHF News, Industry News & Research
From the National Bleeding Disorders Foundation’s President and CEO, Phil M. Gattone, M.Ed. It is with profound sadness that we share the…
Product Update from Novo
Industry News & Research
Novo Nordisk sent a letter to NBDF sharing more information about the current product issue related to NovoSeven® RT and Novoeight ®….
Free Educational Videos on the use of Novel Non-Factor Therapies
Industry News & Research, Living with a Bleeding Disorder
The National Bleeding Disorders Foundation (NBDF) is pleased to announce the availability of a series of educational videos on the use of…
Learn About Clinical Issues in Women with Bleeding Disorders
Industry News & Research, Women with Bleeding Disorders
The National Bleeding Disorders Foundation (NBDF) is pleased to announce a series of educational videos on clinical issues in women, girls, and…