News


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The Partners in Bleeding Disorders Education Program recently relaunched “Understanding Hemophilia,” the purpose of which is to enable the learner to understand the three major steps in normal hemostasis and the basics of treatment and management of patients with hemophilia.

The target audience includes nurses and comprehensive care staff in the U.S. hemophilia treatment center (HTC) network who are responsible for the clinical management and/or education of individuals with hemophilia.

The faculty for this module includes:

Green Park Collaborative, National Hemophilia Foundation, McMaster University, Announce Launch of CoreHEM Project

The collaboration between stakeholders to establish a core set of measurements that would be used to evaluate effectiveness of gene therapies.

The collaboration between stakeholders to establish a core set of measurements that would be used to evaluate effectiveness of gene therapies.

The collaboration between stakeholders to establish a core set of measurements that would be used to evaluate effectiveness of gene therapies.

Novo Nordisk recently announced that the U.S. Food and Drug Administration (FDA) has approved the Biologics License Application (BLA) for REBINYN®, the company’s recombinant, GlycoPEGylated therapy for the treatment of adults and children with hemophilia B (factor IX deficiency). A BLA is a request to the FDA for permission to introduce, or deliver for introduction, a biologic product into interstate commerce.

One of Shire’s investigational therapies, known as SHP656, failed to show significant efficacy in a phase I/II clinical study. The therapy was being developed as an extended half-life treatment for hemophilia A using proprietary technology from Xenetic Biosciences.

A Million Dollar Patient in Perspective

A wider perspective on the "burden" hemophilia patients place on health plans.

The Nationwide Children’s Hospital Pediatric Hematology Division along with its affiliated institution, The Ohio State University College of Medicine, are jointly hosting an upcoming educational training on inhibitors. The Center for Advanced Training in Hemophilia and Inhibitor Management (CATHIM) workshop will focus on the clinical care of patients with hemophilia and inhibitors.

The Partners in Bleeding Disorders Education Program recently relaunched “A School Nurses Guide to Bleeding Disorders: von Willebrand Disease.” The purpose of this activity is to enable the learner to obtain knowledge about von Willebrand disease (VWD), its treatment, and any accommodations that must be made to ensure safe and positive learning environment to the student with VWD.

NHF's update on the CBO scoring of the AHCA; President Trump's proposed budget, and how it will all affect you.

9-Year-Old Girl Raises $40,000 at NHF's Red Tie Soiree

NHF hosted a successful and festive benefit gala, the Red Tie Soiree, on Thursday, May 18, 2017, at Current at Chelsea Piers - Pier 59 in New York City.

Medscape Education recently launched a new activity, the focus of which is a report from the journal Emerging Infectious Diseases (EID) on surveillance as it relates to two unique cases of patients deceased and diagnosed with sporadic type Creutzfeldt-Jakob Disease (sCJD) in the United Kingdom (UK). sCJD is the most common type in a group of rare neurodegenerative diseases characterized by abnormal prion proteins that form sponge like holes in the brain tissue, resulting in death. sCJD arises in patients with no known risk factors for the disease.

The Partners in Bleeding Disorders Education Program recently relaunched an educational activity focused on clinical research at hemophilia treatment centers (HTCs) entitled “The Basics of Research at Hemophilia Treatment Centers.” The purpose of the module is to enable learners who care for patients with bleeding disorders to participate in research, interpret, and apply specialty protocols and outcome findings effectively.

Raise Your Voice and Support Patient Protections!

NOW is the time to call your representative to tell him or her to vote NO on AHCA as revised by the MacArthur amendment.

The BloodCenter of Wisconsin (BCW) recently announced the launch of a new and more sensitive test for von Willebrand disease (VWD), a genetic disorder characterized by either a qualitative or quantitative flaw in von Willebrand factor (VWF). Milwaukee-based BCW is a not-for-profit organization that specializes in blood services, organ, tissue and marrow donation, diagnostic testing, medical services and research.

The Partners in Bleeding Disorders Education Program is offering a new educational module designed to familiarize staff of the 140+ federally recognized U.S.

Bilingual Volunteers Needed

You will help guide people to services and support offered by bleeding disorders organizations and HTCs.

NHF Focus on Physical Fitness

Check out the brand new resources from NHF to help you get active!

Genentech, a member of the Roche Group has announced interim results from their phase III HAVEN 2 study, designed to evaluate the prophylaxis use of emicizumab (ACE910) in children less than 12 years of age with hemophilia A and inhibitors to factor VIII (FVIII).

Grifols Increases Commitment of Factor VIII Donations

The company will donate a minimum of 140 million international units (IU) of factor VIII to the WFH Humanitarian Aid Program over the next five years.

In Honor of World Hemophilia Day, Enroll in MLOF!

MLOF is nearly one-third of the way towards its goal of enrolling 2,000 confirmed carriers in the MLOF Research Repository by the end of 2017.

Hemophilia B Trial Gene Therapy Results Promising

Spark reports that all participants have experienced “consistent and sustained increases in factor IX activity” following administration of SPK-9001.

Advocate for the Community in Your Hometown!

Your Senators and Representatives are coming home for the next two weeks. You can advocate for the community in your own hometown with this guide.

The University of California at San Diego (UCSD) School of Medicine is currently offering a CME-accredited course called “Musculoskeletal Ultrasound in Hemophilia.” The purpose of the two-and-a-half-day program is to provide hands-on training in musculoskeletal ultrasound (MSKUS) as it relates to hemophilic joint disease. The program is being offered multiple times in 2017 (next trainings are scheduled for June 28-30, August 16-18 and October 18-20) at the Hemophilia & Thrombosis Treatment Center at UC San Diego in California.

The Partners in Bleeding Disorders Education Program is offering a new educational module to address the unique challenges facing individuals and families affected by inhibitors. The target audience for this activity includes psychosocial professionals, nurses and other health care providers at hemophilia treatment centers who are involved in the care of persons with congenital hemophilia who have an inhibitor to clotting factors VIII or IX.

The module is designed to meet the following educational objectives: