News

How to Keep Summer Activities Safe for Kids with Bleeding Disorders

Health and Well Being, Living with a Bleeding Disorder

Learn why a popular piece of backyard play equipment is riskier than you might think. It’s summertime, and kids are out of…

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CSL Behring Announces the First Patient has Received FDA ApprovedHEMGENIX® (etranacogene dezaparvovec-drlb) for Hemophilia B

Industry News & Research

HEMGENIX®, the first and only FDA approved gene therapy for hemophilia B,has been proven to elevate and sustain factor IX levels for…

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Announcement from NHF CEO and President

Industry News & Research

Dr. Leanord Valentino announces his impending retirement. His statement reflects on the progress and initiatives made during his three and a half…

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FDA Finalizes Blood Donor Eligibility Guidance

Industry News & Research

On May 11, 2023, the U.S. Food and Drug Administration released final guidance providing recommendations for evaluating blood and plasma donor eligibility using individual risk-based…

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It is Family: A Conversation with Saylor Behrens

Health and Well Being, Living with a Bleeding Disorder

When Saylor Behrens’ biology professor told her class that hemophilia is the result of incest, she grew angry. She knew better. Her…

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Pfizer Highlights Phase 3 Trial Results of Marstacimab

Industry News & Research

Marstacimab is a laboratory-engineered monoclonal antibody developed to treat hemophilia A and B patients, with or without inhibitors. Pfizer has announced positive…

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Camp Klotty Pine is August 7-12. Register Today!

GLHF News

Camp Klotty Pine is a place of encouragement, mentoring, and education. It is a space that allows everyone to be uniquely themselves, breaking…

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Gene Therapy as a Novel Approach to Achieving ITI in FVIII Inhibitors Reviewed

Industry News & Research

The review provides a comprehensive overview of the persistent challenges and current mitigation strategies related to treating and managing hemophilia patients with…

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Does Hemophilia Mean Brittle Bones? Part 1.

Health and Well Being, Living with a Bleeding Disorder

by: Paul Clement Many studies have linked having hemophilia to a significantly increased risk of developing osteoporosis, or “holey bones” (osteo means “bone”…

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FDA Finalizes Blood Donor Eligibility Guidance

Industry News & Research

On May 11, 2023, the U.S. Food and Drug Administration released final guidance providing recommendations for evaluating blood and plasma donor eligibility using individual risk-based…

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Pfizer Highlights Phase 3 Trial Results of Marstacimab

Industry News & Research

Marstacimab is a laboratory-engineered monoclonal antibody developed to treat hemophilia A and B patients, with or without inhibitors. Pfizer has announced positive…

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The Low Cost of Being Female with a Bleeding Disorder?

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

Female hemophilia A patients and carriers have more frequent bleeds than males, yet a smaller proportion receive factor to prevent or stop them, a U.S….

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Now Enrolling: Own Your Path

Industry News & Research

Are you a male, 18-29 years old, and on a prophy regimen for hemophilia treatment? You may qualify for a new program!…

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Four New Documents from MASAC

Industry News & Research

The new guidelines cover recommendations for physical therapy, gene therapy readiness, vaccine guidance, and treatment. Download here. Source: National Hemophilia Foundation

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New in Research: Updates on the “My Life Our Future” Project

Industry News & Research

Learn how this project from NHF, the American Thrombosis and Hemostasis Network, Bloodworks Northwest, and Bioverativ/Sanofi helped inform people with hemophilia on…

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Forty-Five Families will Join us for the Wisconsin Bleeding Disorders Conference June 2-4 in Wisconsin Dells

GLHF News

The Wisconsin Bleeding Disorders Conference is June 2-4 in Wisconsin Dells. Join us at the Kalahari Resort for a Weekend of Family…

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Inhibitor Risk Paper Informed by Genotyping Project

Industry News & Research

Between 2013-2017, the “My Life Our Future” (MLOF) project offered eligible individuals with hemophilia free genotyping, which is historically hard to access,…

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Important: Action Needed Regarding Medicaid and Badgercare Eligibility

Advocacy & Legislation, Industry News & Research

As you may have heard, the Medicaid and CHIP (called Badgercare in Wisconsin) programs are re-starting eligibility reviews. Community members may receive…

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FDA Requests Additional Information on Concizumab from Novo Nordisk

Industry News & Research

The company received a Complete Response Letter from the FDA seeking more information relevant to their BLA for concizumab. Novo Nordisk has…

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Updates on Generic Desmopressin Product

Industry News & Research

Desmopressin has the capacity to boost both factor VIII and von Willebrand factor levels. In July 2020 Ferring Pharmaceuticals suspended manufacturing of…

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New Survey Spotlights Ongoing Concerns for People Living with Hemophilia B

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

Carefully controlled schedules. Undercurrents of uncertainty. Persistent pain. People who are living with hemophilia B, and those who love them, face a…

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HTCs Participate in New CDC Community Counts Data Collection for COVID-19

COVID-19, Industry News & Research

Patients with bleeding orders may be asked some new questions during their next comprehensive clinic visit. COVID-19 information will now be collected…

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Sanofi Announces Publication of Two Phase 3 Fitusiran Trials

Industry News & Research

Fitusiran is being investigated for the prophylactic treatment of adults and adolescents with hemophilia A or B. Sanofi recently announced that results…

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Calling All Walkers! The 2023 Unite for Bleeding Disorders Walk Will Be September 23! Register Your Walk Team Today!

GLHF News

GLHF’s 2023 Unite for Bleeding Disorders Walk will be Saturday, Sept. 23 at the Milwaukee County Zoo (in the Zoo Terrace). We will…

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