News

What’s Next for the ACA?

Advocacy & Legislation, Industry News & Research

The recent news about the passing of United State Supreme Court Justice Ruth Bader Ginsburg and nomination of Judge Amy Coney Barrett…

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CSL Behring States Stimate Will Not Be Resupplied until 2022

Industry News & Research

NHF and HFA have been provided the following statement from CSL Behring. The statement says, in part: “Ferring Pharmaceuticals Inc. initiated a voluntary,…

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Milwaukee County COVID-19 Update

COVID-19, Industry News & Research

The Milwaukee Unified Emergency Operations Center continues to put out up-to-date information for the citizens of Milwaukee County. This information is also…

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NHF Wants Your Input as They Chart a Course for the Future. Take Their Survey Today!

Industry News & Research

The National Hemophilia Foundation (NHF) is working with the bleeding disorders community to envision our future for the next decade, and they…

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NHF Friday Webinar – Gene Therapy: What’s New and What’s Next? October 2, 3 pm.

Industry News & Research

Gene therapy for hemophilia remains a very active area of research, although it may take longer than expected. To discuss this, join…

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Emergency Preparedness

Industry News & Research

The NHF is saddened by the loss of life and destruction of communities due to catastrophic fires in the west and a…

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Unanswered Questions Remain in Gene Therapy

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

A recent commentary published in the journal Haemophilia, posits that while clinical trials for hemophilia gene therapy approach conclusion, there remain significant unanswered…

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Sanofi Publishes Updates to BIVV001 Trial

Industry News & Research

Sanofi recently announced results from their phase 1/2a EXTEN-A trial for their investigational therapy BIVV001, which were published in the New England Journal…

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Hemophilia B Therapy to be Discontinued

Industry News & Research

CSL Behring recently announced that they are discontinuing Mononine®, the company’s human plasma-derived factor therapy indicated for the prevention and control of…

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NHF’s Board of Directors Meeting

Industry News & Research

The National Hemophilia Foundation will be holding our quarterly Board of Directors meeting on Saturday, October 10th at 9:00 AM EDT. The Board…

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Genentech Provides Updates on Hemlibra Product Particles

Industry News & Research

In the fall of last year Genentech reported that during a routine examination of batches of Hemlibra®, they found translucent particles composed…

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NHF, HFA and Hemophilia Alliance Continue Push for Information on Stimate Recall

Industry News & Research

The National Hemophilia Foundation (NHF) and Hemophilia Federation of America (HFA) continue to follow up on issues arising from the recent recall of Stimate (desmopressin)…

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New MASAC Recommendations Focus on Offsite Hemostasis Screening and Treatment

Industry News & Research

The National Hemophilia Foundation’s (NHF) Medical and Scientific Advisory Council (MASAC) issued two new documents, which were adopted by NHF’s Board of…

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Mental Health During Coronavirus

COVID-19, Industry News & Research

by: Debbie de la Riva The collective pursuit to control the spread of coronavirus has resulted in an enormous challenge for the…

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NHF’s 2020 Bleeding Disorders Conference Available On Demand Through September 30!

Industry News & Research

NHF’s Bleeding Disorders Conference was fully virtual this year and included more than 50 sessions. Those sessions are all available on-demand until…

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BioMarin’s New Clinical Study to Focus on Antibody Development to AAVs

Industry News & Research

Last month, BioMarin learned that approval for their investigational hemophilia A gene therapy was not forthcoming but would in fact be delayed…

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Mylan Initiates Voluntary Nationwide Recall of Four Lots of Tranexamic Acid Injection, USP Due to Carton Label Mix-Up

Industry News & Research

On September 1, 2020, NHF and HFA learned that  Mylan N.V. is conducting a voluntary nationwide recall of  four lots of Tranexamic Acid Injection,…

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NHF Receives Five-Year CDC Grant for Education Programs

Industry News & Research

The National Hemophilia Foundation (NHF) has received a five-year cooperative agreement from the Centers from Disease Control and Prevention (CDC). The collaboration,…

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BioMarin Hemophilia A Clinical Development Program: An Update for the Hemophilia Community

Industry News & Research

BioMarin is committed to updating the community regarding our ongoing gene therapy clinical trial program in hemophilia A. BioMarin’s investigational gene therapy…

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FDA Recommends Additional Data for BioMarin’s Investigational Gene Therapy

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

Biomarin announced that they received a Complete Response Letter (CRL) from the U.S. Food and Drug Administration (FDA) on August 18th for their…

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Novo Nordisk Announces Near Resumption of Concizumab Trials

Industry News & Research

Novo Nordisk has announced that clinical trials for their investigational subcutaneous therapy concizumab will resume after an approximate five month pause, initiated…

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Medical Advisory #427: Stimate Recall Update

Industry News & Research

August 13, 2020 CSL Behring and Ferring Pharmaceuticals have announced additional information about a recent recall of lots of Stimate® that was…

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A New Study of Hemophilia Occurrence Finds Many More Cases in the United States

Industry News & Research

Hemophilia is an inherited bleeding disorder in which the blood does not clot properly due to a lack or decrease in a…

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MASAC Encourages People with Bleeding Disorders to be Included in COVID-19 Vaccine Trials

COVID-19, Industry News & Research

Individuals with inherited and acquired bleeding disorders, including hemophilia have substantial deficits in coagulation, for which they receive a variety of protein…

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