News

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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Health and Wellness Update from Dr. Leonard Valentino About Vaccines, Hesitancy and Understanding VITT

COVID-19, Health and Well Being

COVID-19 and the pandemic continue to dominate the news cycle for most Americans, although many of us would like to think about…

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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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How Caregivers Can Care for Themselves

Health and Well Being

by: Michael Hickey Caregivers devote themselves to the well-being of others, but to be their best they need to practice self-care. Being…

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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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Let Your Voice Be Heard! Take the National HTC Patient Satisfaction Survey Today!

GLHF News, Health and Well Being, Living with a Bleeding Disorder

Hemophilia Treatment Centers (HTCs) across the United States are participating in the 2021 National HTC Patient Satisfaction Survey! If you, or someone…

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We Miss Seeing You! Join us (Virtually) at our Upcoming Programs and Events!

GLHF News

We have been limited in our ability to meet face-to-face over the last year, but we want to continue to stay connected…

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Extended ACA Open Enrollment Period

COVID-19, Health and Well Being

You can enroll in health plans due to the COVID-19 emergency through August 15, or anytime if you have certain life changes…

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State of WI Declares April 17 World Hemophilia Day!

Advocacy & Legislation

Whereas; since its designation by the World Federation of Hemophilia in 1989, World Hemophilia Day has been celebrated on April 17 as…

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Good News for Pregnant and Breastfeeding Vaccinated Mothers

COVID-19, Health and Well Being

Early studies have indicated that women who are pregnant or breastfeeding who have received a COVID-19 vaccination can pass antibodies along to…

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COVID-19 Rates Are Rising

COVID-19

There has been much positive news around the US vaccine efforts: about 207.9 million doses of the vaccine have been administered, 62.4 million…

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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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How the American Rescue Plan Can Affect Your Healthcare Coverage

COVID-19

The new law lowers costs and opens up new options to get health insurance coverage. The American Rescue Plan (ARP), signed into…

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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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Stay Informed and Take Action About Current Legislative Issues. Sign up for Phone2Action Today!

GLHF News

Phone2Action is a new software system that allows GLHF to connect with you regarding our state advocacy work. It gives us the…

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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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In Celebration of World Hemophilia Day, Join GLHF for a Friendly Game on GooseChase, April 12-18! 

Advocacy & Legislation, GLHF News

This year, in celebration of World Hemophilia Day, Saturday, April 17, we’re challenging the bleeding disorders community to a friendly game of…

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