News


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Emicizumab-kxwh (HEMLIBRA, Genentech) was approved for use by the US Food and Drug Administration on November 16, 2017 for individuals with hemophilia A and inhibitors.

NHF's MASAC has issued the latest revision to their most comprehensive treatment document.

The designation is for people with hemophilia A without inhibitors.

Dawn Rotellini

NHF is expanding its work with the bleeding disorders community around the world.

ICER is an independent and non-partisan research organization that evaluates the clinical and economic value of prescription drugs, medical tests, and other healthcare and healthcare delivery innovations.

Grifols, S.A. recently announced that in 2017, the company donated over 25 million international units (IU) of factor products used to treat hemophilia A and B. According to a recent press release, the donation is part of Grifols’ commitment to provide a minimum of 200 million IU of factor to the World Federation of Hemophilia (WFH) Humanitarian Aid Program over a span of eight years – Grifols began this commitment in 2014. The company expects to make an additional donation of nearly 25 million IUs in 2018.

NHF CEO Val D. Bias

National Hemophilia Foundation CEO Val D. Bias spoke to the leaders of NHF’s 52-chapter networks at the NHF 2018 Chapter Leadership Seminar in San Francisco, California.

NHF 70th the Fight to Preserve ACA Patient Protections Goes On

2018 marks NHF’s 70th year as the bleeding disorders community’s chief advocate.

Graduation hat

Applications are now open! The selected KCS recipient will receive an award of $1,000 toward their tuition costs.

Updated statement from Genentech on Hemlibra, March 28, 2018.

Rockville, Maryland-based Precision BioLogic is collaborating with Roche and Genentech on the development of a new diagnostic kit for inhibitor testing of individuals with hemophilia A. The modified Nijmegen-Bethesda Assay (MNBA) screening kit was developed for broad utility for both laboratories seeking a standardized inhibitor assay for clinical management and multi-center clinical studies of patients with hemophilia A.

Novo Nordisk Announces BLA Submission for Extended Half-Life FVIII Therapy

NHF received information from Genentech’s Clinical Development Lead regarding reports of the death of patients utilizing Hemlibra (emicizumab).

“Advances in Managing Inhibitors in Patients with Hemophilia A,” is the newest educational opportunity to become available through Medscape. It is intended for hematologists, pediatricians, nurses and physicians specializing in emergency medicine. The goal of the activity is to discuss recent advances in the understanding of inhibitors in patients with hemophilia A, including the risks associated with inhibitors as well as current and new approaches to management.

Upon completion of this activity, participants will have increased knowledge of:

Aptevo Therapeutics recently announced patient-reported data on individuals currently being treated with IXINITY®, the company’s recombinant factor IX product. IXINITY® is indicated for the control and prevention of bleeding episodes and for perioperative management in adults and children, 12 years of age or older, with hemophilia B. The results were presented at the Thrombosis and Hemostasis 2018 Summit of North America, held in on March 8-10, 2018 in San Diego, CA.

CSL Behring Discontinues Production and Distribution of Monoclate-P®

Women with linked arms

The study focused on disparities associated with bleeding symptoms, age at diagnosis and provider interventions for females with bleeding disorders.

Team NHF

Runners in the NYC Half Marathon are an inspiration to the bleeding disorders community.

Novo Nordisk recently announced that they have submitted a Biologics License Applications (BLA) to the U.S. Food and Drug Administration for N8-GP (tuco-tuco alfa pegol), a recombinant, extended half-life factor VIII (FVIII) product intended for the prevention and treatment of bleeding in people with hemophilia A.

a young man at his computer

If you or someone you care for had contact with an HTC in 2017, your feedback is needed!

Ron Bark

NHF adds their condolences to all those whose lives Ron Bark touched.

Barry Haarde

Barry Haarde was a cyclist and community activist whose strength will never be forgotten.

Registration is now open for the National Heart, Lung, and Blood Institute (NHLBI) State of the Science Workshop, Factor VIII Inhibitors: Generating a National Blueprint for Future Research. The goal of the workshop is to solicit hemophilia community-wide input into a coordinated national blueprint for future basic, translational, and clinical research focused on factor VIII immunogenicity and factor VIII inhibitor prevention and eradication.

Investigators at the Children’s Hospital of Los Angeles (CHLA) recently published a retrospective review of patient clinical data, the findings of which reflect a series of largely successful transitions to extended half-life (EHL) therapies. The data was drawn from patients treated at CHLA’s Hemostasis and Thrombosis Center (HTC).

Steven Pipe, MD

Steven Pipe, MD, NHF's Chair of MASAC, looks at the future of bleeding disorders treatment.

Novo Nordisk recently announced the availability of REBINYN®, the company’s recombinant GlycoPEGylated product for the treatment of adults and children with hemophilia B (factor IX deficiency). The therapy was first approved by the U.S. Food and Drug Administration in May of 2017.

REBINYN® is indicated for on-demand treatment and control of bleeding episodes, and the perioperative management of bleeding in adults and children with hemophilia B. It is not indicated for routine prophylaxis or for immune tolerance induction in patients with hemophilia B.