News

HFA’s State of the States: Summer 2020

Advocacy & Legislation, COVID-19

Policy and Advocacy work is increasingly important at the state level. In an effort to keep you informed about the work happening…

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Unanswered Questions Remain in Gene Therapy

Industry News & Research

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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What to Do if You Miss Your Child’s Annual Exam

Living with a Bleeding Disorder

Routine healthcare visits are being held up because of the pandemic, so many parents are missing their children’s annual hemophilia treatment center…

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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

Industry News & Research

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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GLHF Recognized as Chapter of Excellence at NHF’s Virtual Bleeding Disorders Conference

GLHF News

Each year, NHF recognizes Chapters achieving high standards and demonstrating best practices through its Chapter Review Process. Chapters achieving Chapter of Excellence…

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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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Last Week’s Camp Klotty Pine Was Just What Camper’s Needed!

GLHF News

Last week, we had our first virtual Camp Klotty Pine experience – and the results were amazing! GLHF and camp staff provided…

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Documentary Film, Bombardier Blood, Released Worldwide. Order Today!

GLHF News

The film, Bombardier Blood (@bombardierblood) had its worldwide release on August 18! The documentary of Chris Bombardier’s attempt to be the first…

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Be a Part of Our Walk Community! Unite for Bleeding Disorders Walk is Going Virtual, September 26. Register Today!

GLHF News

This year, we invite you to join us for our first-ever Virtual Walk on Saturday, September 26! While we are disappointed that…

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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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