News
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GLHF Website Updates, Including Medicare Changes, Gene Therapy, Pain Management and more
COVID-19, GLHF News, Health and Well Being, Living with a Bleeding Disorder
As we all know, the web is a pretty fast-moving place. In that fast-moving environment, GLHF likes to think that its website…
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First Hemophilia A Gene Therapy Approved
Industry News & Research
The US Food and Drug Administration (FDA) approved Roctavian, a one-time gene therapy for adults with severe hemophilia A who do not…
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As Part of Medicaid “Unwinding,” Disenrollments Are Now Underway in about 40 States. Will You Lose Your Medicaid? Learn What You Can Do!
Health and Well Being, Industry News & Research
Reports from 26 States Show More than 1.5 M Beneficiaries Have Already Been Disenrolled. Wisconsin residents: Congress told states it was time…
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Bleeding Disorders: What Your Pain Is Trying to Tell You
Health and Well Being, Living with a Bleeding Disorder, Pain Management
An overview of the types of pain you might experience, what you can do to manage pain at home, and when to…
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Rate of Coverage Losses from Medicaid Unwinding Continues to Cause Alarm
Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
Concern grows over the mounting tally of Medicaid coverage losses impacting people who remain eligible for the program. Read how federal regulators…
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FDA Approves First-Ever Nonprescription Oral Contraceptive
Health and Well Being, Industry News & Research
The new approval will allow consumers to purchase this oral contraceptive medication without a prescription at stores and online. The U.S. Food…
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Patient Safety in the Age of Gene Therapy
Industry News & Research
This paper takes a broad, holistic view of patient safety in the era of hemophilia gene therapy. After several decades of preclinical…
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Statement: HFA Responds to Latest Gene Therapy Announcement
Gene Therapy, Industry News & Research, Living with a Bleeding Disorder
Yesterday, the U.S. Food and Drug Administration approved Roctavian (valoctocogene roxaparvovec), the first gene therapy for hemophilia A. This new treatment option, for the treatment of…
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Sanofi Announces Data Showing Effective Bleed Protection in Children with Severe Hemophilia A
Industry News & Research
Pivotal data from the Phase 3 XTEND-Kids study evaluating ALTUVIIIO™ [Antihemophilic Factor (Recombinant), Fc-VWF-XTEN Fusion Protein] once-weekly prophylaxis, a factor VIII replacement…
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FDA Approves BioMarin’s Gene Therapy for Adults with Severe Hemophilia A
Industry News & Research
BioMarin Pharmaceutical Inc. today announced the U.S. Food and Drug Administration approved ROCTAVIAN™ (valoctocogene roxaparvovec-rvox) gene therapy for the treatment of adults…
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Patient Safety in the Age of Gene Therapy a Central Focus of Review Article
Industry News & Research
After several decades of preclinical and clinical research, pitfalls and progress, gene therapies for hemophilia A and B have become a reality…
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Susan Skinner Memorial Fund Scholarship Program is Open
Advocacy & Legislation, Health and Well Being, Industry News & Research, Living with a Bleeding Disorder
that the call for applications for the Susan Skinner Memorial Fund (SSMF) Scholarship program is now open! Please spread the word among…
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An Alarming Rate of Coverage Losses
Advocacy & Legislation, Industry News & Research
Early data on Medicaid “unwinding” shows an alarming rate of coverage losses for enrollees who may still be eligible. Colorado and Texas…
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It’s Time to Prepare for Camp! Camp Klotty Pine is August 7-12.
GLHF News
Is your camper prepared? Are you?It’s time to start preparing for Camp Klotty Pine as we count down the days to camp…
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Inequities in Thrombosis and Hemostasis Lab Testing the Focus of Illustrated Review
Industry News & Research
Authors of the review posit that reference intervals such as those utilized in thrombosis and hemostasis, are based on structural inequities. A…
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First Hemophilia B Patient Dosed with Gene Therapy Product
Industry News & Research
HEMGENIX is indicated for the treatment of adults with hemophilia B who currently use factor IX prophylaxis therapy, or have current or…
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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…