News

New FIX Chromogenic Assay Launched by Precision Biologics

Industry News & Research, Uncategorized

This assay is designed to help determine factor IX activity levels in the plasma of individuals with hemophilia B who are two…

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FDA Accepts BioMarin’s Biologics License Application (BLA) for Valoctocogene Roxaparvovec AAV Gene Therapy for Adults with Severe Hemophilia A

Industry News & Research, Uncategorized

If Approved, Would Be 1st Gene Therapy in U.S. for Treatment of Severe Hemophilia A PDUFA Target Action Date is March 31, 2023….

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Positive Gene Therapy Results

Industry News & Research, Uncategorized

Pfizer had positive results from the Phase 3 BENEGENE-2 study evaluating fidanacogene elaparvovec, an investigational gene therapy, for the treatment of adult…

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Common Questions About von Willebrand Disease (VWD)

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Uncategorized

It’s the most prevalent, yet lesser known, bleeding disorder. Here’s what you need to know about VWD. by: Michael Hickey Of the…

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NHF Fellowship: 50 Years of Insights, Innovation, and Breakthroughs

Industry News & Research, Research, Uncategorized

NHF’s Judith Graham Pool Postdoctoral Research Fellowship program turns 50. We spoke with five awardees about how the fellowship shaped their careers….

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Can People with Bleeding Disorders Take Blood Thinners?

Industry News & Research, Living with a Bleeding Disorder, Uncategorized

by: Donna Behen Blood Safety Millions of Americans who have or are at high risk for heart disease regularly take anti-platelet drugs…

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Telehealth for the Bleeding Disorders Community

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Uncategorized

Telemedicine provided vital access to blood and bleeding disorders care during the pandemic. What does the future hold for this technology? Remote…

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Are You Ready for GLHF’s 2023 Best Bloody Events? Holiday Ticket Prices Run Through Jan. 1!

GLHF News, Uncategorized

New this year: Purchase tickets to multiple cities, at one time, and receive discounted pricing.  Are you as excited as we are…

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CDC Public Health Webinar on Blood Disorders; Featured GLHF’s Kaveh Shabtaie

Advocacy & Legislation, GLHF News, Uncategorized

The Centers for Disease Control and Prevention’s (CDC) Division of Blood Disorders offers an ongoing Public Health Webinar Series on Blood Disorders. The…

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Volunteer with GLHF in 2023!

Events, GLHF News, Uncategorized

GLHF would not be able to put on several programs and events throughout the year without the help of our incredible volunteers….

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Rare Disease Day is Feb. 27! Dr. Califf, Commissioner of Food and Drugs, Kicks Off This Year’s Theme, “Intersections with Rare Diseases – A Patient Focused Event”

Advocacy & Legislation, Living with a Bleeding Disorder, Uncategorized

The Food and Drug Administration (FDA) has announced that FDA’s Rare Disease Day is Monday, February 27. Registration is open for this…

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FDA Approves First Gene Therapy to Treat Adults with Hemophilia B

Industry News & Research, Living with a Bleeding Disorder, Uncategorized

On November 22, the U.S. Food and Drug Administration approved Hemgenix (etranacogene dezaparvovec), an adeno-associated virus (AAV) vector-based gene therapy. It is…

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Sanofi Provides Fitusiran Trial Updates at ISTH

Uncategorized

These updates were presented during the International Society on Thrombosis and Haemostasis (ISTH) Congress in London. Sanofi recently shared new clinical trial…

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Additional Health Risks for Men with Hemophilia

Uncategorized

Diabetes and infection with human immunodeficiency virus (HIV) increase the risk of high blood pressure (hypertension) among men with hemophilia, a U.S. study…

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Pain Management for Adults

Living with a Bleeding Disorder, Uncategorized

Pain is a serious medical concern in America.  For those with a bleeding disorder, pain as a result of a bleeding episode…

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Hemophilia History: The Romanov Family – Insights From Historian Dr. Helen Rappaport

Industry News & Research, Living with a Bleeding Disorder, Uncategorized

Insights from historian Dr. Helen Rappaport – NHF sat down with historian Dr. Helen Rappaport to learn more about how hemophilia impacted…

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First Patient Dosed in Freeline’s Dose-Confirmation Trial for Hemophilia B Gene Therapy

Uncategorized

The company’s investigational gene therapy has been developed for individuals with severe or moderately severe hemophilia B. The UK-based biotechnology company Freeline…

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NHF Statement on Approval of the Pfizer-BioNTech Vaccine for Children Ages 5-11

Health and Well Being, Industry News & Research, Uncategorized

COVID-19 vaccine for children ages 5-11 receives final approval. “NHF applauds the CDC’s recommendation of the Pfizer-BioNTech COVID-19 vaccine for children 5…

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State of Denial: Tips on How to Work with Your Insurance Provider When You are Denied Coverage for Services or Medications

Health and Well Being, Industry News & Research, Living with a Bleeding Disorder, Uncategorized

by: Laurie Kelley When you submit an insurance form for coverage, have you ever been denied?   What should you do if you’ve already…

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CDC Public Health Webinar on NHF Guidelines

Uncategorized

Healthcare professionals, register now for February CDC webinar on new NHF-McMaster hemophilia care guidelines. NHF is excited to announce that the Centers for…

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

Advocacy & Legislation, Industry News & Research, Uncategorized

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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Gene Therapy Trial Data Suggests Efficacy in the Presence of Antibodies

Uncategorized

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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New Chief Scientific Officer Joins NHF

Industry News & Research, Uncategorized

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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Good News for Pregnant and Breastfeeding Vaccinated Mothers

COVID-19 / Coronavirus, Health and Well Being, Uncategorized

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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