News
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…
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…
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…
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…
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…
Statement: HFA Responds to Latest Gene Therapy Announcement
Industry News & Research
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…
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…