News

Ask a Social Worker: How Dangerous Is Cutting for Someone with Hemophilia?

Health and Well Being, Living with a Bleeding Disorder

Understanding the reasons why people self-harm, and what you can do to help. Ask a Social Worker is a monthly column featuring…

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The Role of Pharmacy Benefits Managers (PBMs)

Advocacy & Legislation

Pharmacy benefits managers (PBMs) are middlemen that create and administer drug formularies on behalf of health insurers, self-insured employers, Medicaid, and other…

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Diabetes Risk in Hemophilia vs Unaffected Groups Compared in Retrospective Study

Industry News & Research, Living with a Bleeding Disorder

The hemophilia data for this study was drawn from de-identified medical records from four North American hemophilia treatment centers. The U.S. diabetes…

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Bayer Announces Discontinuation of Kogenate® FS

Industry News & Research

Kogenate® was first approved by the U.S. Food and Drug Administration in 1993. Bayer has announced that they are discontinuing the recombinant…

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FDA Grants Breakthrough Status to BIVV001

Industry News & Research

BIVV001 is an investigational recombinant factor VIII therapy (rFVIII) developed for the prevention of bleeding episodes in hemophilia A patients via once…

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BioMarin Announces Delay in Application to FDA

Industry News & Research

Roctavian is Biomarin’s investigational hemophilia A gene therapy, which is currently in multiple ongoing clinical trials. BioMarin recently announced that their planned…

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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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My Biggest Fear Comes True for My Adult Son With Hemophilia

Health and Well Being, Living with a Bleeding Disorder

by: Cazandra Campos-MacDonald My biggest fear for my sons, who live with severe hemophilia, is an auto accident. When my oldest son, Julian, began to…

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Managing Bleeding Disorders Requires Attention to Mental Health

Health and Well Being, Living with a Bleeding Disorder

by: Jennifer Lynne It’s easy to spot physical damage, such as swollen joints, nosebleeds, limps, and bruises, when one suffers from a…

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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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What Older People with Bleeding Disorders Need to Know About Osteoporosis

Health and Well Being, Living with a Bleeding Disorder

Compared with other groups, people with hemophilia have a higher risk of the disease. by: Kathryn Anne Stewart Osteoporosis, a disease of…

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6 Facts About Women and Hemophilia

Health and Well Being, Living with a Bleeding Disorder

Why it often goes misdiagnosed, the most common symptoms, and more. 1. Women with hemophilia are often undiagnosed or misdiagnosed Historically hemophilia…

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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, 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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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

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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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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