News
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Pfizer Announces Positive Results from Hemophilia A and B Trial
Industry News & Research
Pfizer Inc. today announced their Phase 3 BASIS clinical trial evaluating marstacimab has met its primary endpoints, having demonstrated statically significant and…
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HFA Launches Clinical Trials Search Site
Industry News & Research
Hemophilia Federation of America has launched a new resource and search feature for clinical trials for patients with bleeding disorders. “Patients and families have asked for…
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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…