News

Honoring the Legacy of Dr. Charles Drew

GLHF News, Industry News & Research

NHF staff and experts share insights on the remarkable impact of Dr. Charles Drew. Watch Video. June 3 is the birth date…

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GLHF Awarded Continued Cooperative Agreement from HRSA for the Northern States Region

GLHF News, Industry News & Research

GLHF is honored to announce that we have secured another five-year cooperative agreement with the Health Resources Services Administration (HRSA) to continue…

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Bone Health in VWD and Hemophilia Carriers the Focus of Retrospective Study

Industry News & Research

The study looked at the prevalence and risk factors of osteoporosis, osteoarthritis, and bone fractures. The issue of poor bone health represents…

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FDA Accepts Priority Review BLA for Hemophilia B Gene Therapy

Industry News & Research

The U.S. Food and Drug Administration (FDA) has accepted CSL Behring’s Biologics License Application (BLA) for priority review of etranacogene dezaparvovec, an…

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Anxiety, Depression Need Better Management in Hemophilia: Survey

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

by: Lindsey Shapiro Ph.D.  Symptoms of pain, anxiety, and depression generally increased with disease severity in people with hemophilia and were also associated with…

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New Data Shows Eptacog Beta Safe and Effective in Pediatric Patients

Industry News & Research

Newly published data from a phase 3 clinical study suggests that the recombinant factor VIIa bypassing agent (BPA) eptacog beta was used…

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Meet Dr. Bosula Oluwole

Industry News & Research

Dr. Oluwole is a recent JML Fellowship recipient. Watch Dr. Oluwole’s video, Dedicated to Finding a Cure for Sickle Cell Disease, here….

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Pfizer Reports First Quarter 2002 Update of Gene Therapy Trial

Industry News & Research

Read the original press release here: https://s28.q4cdn.com/781576035/files/doc_financials/2022/q1/Q1-2022-PFE-Earnings-Release.pdf During a recent quarterly stakeholder report, Pfizer announced that in March 2022 the US Food and…

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New Data Shows Eptacog Beta Safe and Effective in Pediatric Patients

Industry News & Research

Newly published data from a phase 3 clinical study suggests that the recombinant factor VIIa bypassing agent (BPA) eptacog beta was used…

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Bleeding Disorders A to Z: How Bleeding Disorders Are Diagnosed

Health and Well Being, Industry News & Research

Here’s a rundown of the various blood tests providers use to diagnose hemophilia, vonWillebrand Disease and other bleeding disorders. by: Michael Hickey…

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

Industry News & Research, Living with a Bleeding Disorder

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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The ACA’s “Family Glitch” – What it is and How it Could Impact You

Industry News & Research

The so-called “family glitch” is one of the persistent deficiencies in the Affordable Care Act. In their end-of-April post, the Hemophilia Federation…

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

Industry News & Research

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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NHLBI Grant Supports Scientific Research to Enhance Hemophilia A Gene Therapies

Industry News & Research

The new grant will fund basic and translational studies to improve gene therapies for hemophilia A. A group of investigators are embarking…

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New Government Funded Research Program Created to Help Improve Gene Therapies for People with Hemophilia A

Industry News & Research

A group of investigators are embarking on a new research program designed to unpack some of the outstanding fundamental questions associated with…

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Medicaid Renewals Post Pandemic

Industry News & Research

Government health agencies have begun preparing for the end of the COVID-19 public health emergency. When the emergency period ends, state Medicaid…

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BioMarin Provides Update to Ongoing Phase 3 Hemophilia A Gene Therapy Study

Industry News & Research

An update for the hemophilia community from BioMarin, regarding the ongoing Phase 3 BioMarin hemophilia A gene therapy study, and a serious…

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Sanofi and SOBI Announce Results of XTEND-1 Phase 3 Study

Industry News & Research

Read the original press pelease here. Efanesoctocog alfa met primary and key secondary endpoints in pivotal study in hemophilia A, demonstrating superiority to prior…

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Freeline Announces First Patient Doses in Hemophilia B Trial

Industry News & Research

Freeline TherapeuticsHoldings plc announced that the first patient was dosed in its Phase 1/2 B-LIEVE dose-confirmation clinical trial of FLT180a for the…

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An Update on Gene Therapy for Hemophilia

Industry News & Research

Answers to common questions about this potentially game-changing treatment. After several decades of research, gene therapy for hemophilia is moving closer to…

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Hemophilia A vs. B: What’s the Difference?

Industry News & Research, Living with a Bleeding Disorder

Much is the same when it comes to hemophilia A and B, but a few key differences change how common—and how treatable—they…

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A Brief History of Gene Therapy: What It Means and Its Promise for the Hemophilia B Community

Industry News & Research, Living with a Bleeding Disorder

Over 10,000 individuals worldwide have been treated with various gene therapy products. Gene therapy is a medical treatment that uses DNA to…

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Cell Therapy Hits a Stumbling Block

Industry News & Research

Cell therapy is a fascinating approach to treat hemophilia. But recently the clinical trials hit a stumbling block. What happened? Read more…

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Meet MASAC’s New Chair: Dr. Amy Dunn

Industry News & Research

Dunn looks to diversity and advocacy as the incoming head of MASAC. One patient changed Dr. Amy Dunn’s entire career in her…

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