News

Wisconsin State Journal: Don’t Let Insurers Undermine Copay Help for Wisconsin Patients

Advocacy & Legislation, Industry News & Research

by: Sen. André Jacque and Rep. Paul Tittl | April 17, 2021 The health and economic impacts of the ongoing pandemic have…

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NHF’s Bleeding Disorders Conference, August 25 – 28, 2021!

Industry News & Research

NHF’s Annual Bleeding Disorders Conference (BDC) is their signature event and highlights their commitment to education. Leading community members and experts on…

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A Message from NHF President and CEO Leonard A. Valentino, M.D. Regarding the Fight Against Racism

Health and Well Being, Industry News & Research

The verdict is an important and significant step forward in the fight against racism, and the violence that it brings to our…

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WFH: Specific Risks of COVID-19 to the Bleeding Disorders Community

COVID-19, Industry News & Research

The COVID-19 Task Force of the World Federation of Hemophilia (WFH) has released a statement on risks of acquiring COVID-19 disease and…

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BioMarin Presents Positive Safety and Efficacy Data for their Hemophilia A Gene Therapy

Industry News & Research

These data were presented by BioMarin at the American Society of Gene & Cell Therapy Virtual Meeting, which was held May 11-14,…

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Gene Therapy Trial Data Suggests Efficacy in the Presence of Antibodies

Industry News & Research

The recent American Society of Gene & Cell Therapy (ASGCT) Virtual Meeting featured updates from the phase III HOPE-B clinical trial of…

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NHF Marks the 40th Anniversary of the HIV Epidemic

Industry News & Research, Living with a Bleeding Disorder

June 3, 2021 – Statement from Nathan Schaefer, Vice President of Public Policy, National Hemophilia Foundation This June marks a painful anniversary…

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NHF Compiles List of 2021 Scholarships! Apply Today!

Health and Well Being, Industry News & Research

Time for an important reminder – “Scholarship season” is now in full swing! NHF’s information service, HANDI, compiles an annual online list…

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Video: Diagnostic Challenges and New VWD Guidelines

Industry News & Research, Living with a Bleeding Disorder

In this video, Robert Sidonio Jr., M.D., discusses the new von Willebrand Disease (VWD) Guidelines and the most significant changes that healthcare…

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NHF Celebrates Women’s Health Month with Series of Webinars Critical to Women and Bleeding Disorders

Health and Well Being, Industry News & Research

We are marking women’s health month with a series of webinars that focus on critical issues for women with bleeding disorders. Our…

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Take the National HTC Patient Satisfaction Survey

Industry News & Research

This national survey is designed to assess patient demographics, their satisfaction with the HTC’s core treatment team, its services, and care processes….

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Study Looks at Neuraxial Anesthesia and Postpartum Complications in Hemophilia

Industry News & Research

Neuraxial anesthesia, a focus of this study, refers to the administration of local anesthetics and analgesia to targeted locations in the spinal…

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Gene Therapy Licensing Agreement Between uniQure and CSL Now in Effect

Industry News & Research

The commercialization and licensing agreement between the two companies went into effect on May 6th. May 7, 2021 uniQure recently announced that…

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New Chief Scientific Officer Joins NHF

Industry News & Research

Kevin Mills, PhD has joined the National Hemophilia Foundation as chief scientific officer. A graduate of University of Colorado Boulder, MIT, and…

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uniQure Announces End of Clinical Hold on Hemophilia B Gene Therapy Program

Industry News & Research

Late last year the FDA put a clinical hold on the program in response to a single trial participant who was diagnosed…

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A Groundbreaking Discovery for Hemophilia Research

Health and Well Being, Industry News & Research

Biochemist Gordon Vehar, PhD, vice president of external innovation at BioMarin Pharmaceutical Inc., has been at the forefront of a scientific revolution….

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NHF’s Dr. Leonard Valentino Addresses COVID-19, Vaccines and Collaborative Progress

COVID-19, Industry News & Research

You have been reaching out to us with your questions and concerns about the COVID-19 vaccines and we are grateful that you…

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Learn More About the COVID-19 Vaccines and ITP

COVID-19, Industry News & Research

The Platelet Disorder Support Association recently recorded a patient education webinar on the new COVID-19 vaccines and immune thrombocytopenic purpura (ITP) As…

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uniQure Announces Findings from HCC Case Investigation in HOPE-B Trial for Gene Therapy

Industry News & Research

The focus of the HOPE-B trial is etranacogene dezaparvovec, uniQure’s investigational gene therapy candidate for individuals with severe and moderately severe hemophilia…

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The Impact of Copay Accumulator Adjuster Programs on Patients

Industry News & Research

In the age of high deductibles and patient out-of-pocket expenditures, more and more people depend on copay assistance to afford their life-saving…

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Spark Announces Preliminary Data from Investigational Gene Therapy Trial

Industry News & Research

Spark Therapeutics announced preliminary data from part one of their ongoing phase 1/2 open-label, non-randomized, dose-finding study of SPK-8016, the company’s investigational…

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Sanofi Revises Fitusiran Dosing Regimen to Mitigate Risk

Industry News & Research

Source: Joint statement from the European Hemophilia Consortium, the World Federation of Hemophilia, and the National Hemophilia Foundation Fitusiran update following EAHAD…

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Video: The State of Copay Accumulator Adjustment

Industry News & Research

In this video, Kollet Koulianos from NHF’s Payer Relations team explains the significance of copay Accumulator Adjustment programs. Watch now. Source: National…

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19 Recommendations for Better Diagnosis and Treatment of VWD

Industry News & Research

The guidelines were developed by panels of 32 individuals, including hematologists, people living with VWD, and scientists with expertise in guideline development…

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