News


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According to a recent study, most post pubertal girls and adolescents who experience heavy menstrual bleeding are not screened for von Willebrand disease (VWD), despite years of recommendations from the American College of Obstetricians and Gynecologists. Investigators came to this conclusion after conducting a retrospective analysis of a national claims database of public and privately insured individuals from 2011-2013.  

Study Shows VWD Testing Remains Low

Most postpubertal girls and adolescents who experience heavy menstrual bleeding are not screened for von Willebrand disease (VWD), despite years of recommendations from the American College of Obstetricians and Gynecologists.

A group of Canadian researchers recently published findings from a clinical study on the use of prophylaxis with a standard half-life recombinant factor VIII (SHL-rFVIII) therapy to treat boys with severe hemophilia A. They investigated an approach to prophylactic therapy in which patients began by receiving weekly infusions of SHL-rFVIII and ultimately transition to “tailored frequency-escalated prophylaxis.” The lead investigator of the study was Professor Brian M Feldman, MD of the Division of Rheumatology at The Hospital for Sick Children in Toronto.

Prophylaxis study results for boys with severe hemophilia A

Researchers investigated an approach to prophylactic therapy in which patients began by receiving weekly infusions of standard half-life recombinant factor VIII and ultimately transition to “tailored frequency-escalated prophylaxis."

Honoring the Past, Embracing the Future

NHF's Red Tie Soiree paid tribute to longtime advocates for the bleeding disorders community while looking forward to the future of research and treatment.

Authors of an article published recently in the Journal of Thrombosis and Haemostasis (JTH) looked at the treatment of individuals with factor X deficiency (FX) with a human plasma-derived concentrate (pdFX). FX is one of the rarer bleeding disorders with an estimated incidence of 1 in 500,000 to 1 in a million and though they represent a very small patient population the symptoms associated with FX are no less problematic, especially if not properly treated.

Advanced Considerations for the Recognition, Appropriate Diagnosis, and Timely Management of von Willebrand Disease and Other Bleeding Disorders among Women in Non-Hematology Health Care Settings

The study looked at the treatment of individuals with factor X deficiency with a human plasma-derived concentrate.

Joan Gill, MD

Dedicated clinician and distinguished researcher passed away on May 9, 2018.

NHF 70th: Unite for Bleeding Disorders

Our Unite for Bleeding Disorders walks bring the community together in a way that honors the past while looking forward to the future.

Medicaid

CMS rejects time limit proposal in Kansas; allows work requirements in several other states.

Healthcare professionals who manage patients with hemophilia can enhance their knowledge of gene therapy for hemophilia.

Medscape has launched a new education program for providers seeking to enhance their knowledge of gene therapy for hemophilia. “Clinical Advances in Gene Therapy for Hemophilia,” is presented through a collaboration between Medscape, the National Hemophilia Foundation, the European Haemophilia Consortium and the World Federation of Hemophilia. The program is supported by an independent educational grant from BioMarin.

Mary Lesh, RN, MS, CPNP

In recognition of National Nurses Week, Mary Lesh, RN, MS, CPNP speaks of the care HTC nurses provide to people with bleeding disorders.

NHLBI Factor VIII Inhibitor Workshop Registration Now Open

The two-day event will be held on the main campus of the National Institutes of Health in Bethesda, Maryland, May15-16, 2018.

A study conducted at the Los Angeles-based Orthopaedic Institute for Children (OIC) suggests that enhanced education on intravenous self-infusion of factor therapy can significantly reduce prosthetic joint infections for hemophilia patients. The lack of adherence to proper self-infusion protocol, including the practice of universal precautions, can put patients at a higher risk for infections.   

A study conducted at the Los Angeles-based Orthopaedic Institute for Children (OIC) suggests that enhanced education on intravenous self-infusion of factor therapy can significantly reduce prosthetic joint infections for hemophilia patients. The lack of adherence to proper self-infusion protocol, including the practice of universal precautions, can put patients at a higher risk for infections.   

Knee joint

OIC study suggests that enhanced education on intravenous self-infusion of factor therapy can significantly reduce prosthetic joint infections for hemophilia patients.

Researchers from Sweden and the U.S. recently published an article that focused on potential correlations between patients with von Willebrand disease (VWD), hospitalizations and prophylaxis. The authors conducted a retrospective study of inpatients and outpatients, both with and without VWD. Their objective was to investigate the frequency of hospital admittances and determine whether the implementation of a prophylactic treatment regimen is associated with a reduction in hospitalizations.

Doctor counseling a patient

The study investigated the frequency of hospital admittances for people with VWD to determine if the implementation of a prophylactic treatment regimen is associated with a reduction in hospitalizations.

There is no time like Spring and its milder temps, to get re-energized and become an engaged steward of your health through exercise and nutrition. The National Hemophilia Foundation (NHF)’s information resource center HANDI would like to make consumers aware of several readily accessible educational tools to get you started on living well.

HANDI hopes the following resources will help to kick start your campaign!

Shire recently announced that the U.S. Food and Drug Administration (FDA) has approved the company’s recombinant von Willebrand factor (rVWF) product VONVENDI®, for perioperative management of bleeding in adults (age 18 and older) with von Willebrand disease (VWD). The therapy had already been approved for the on-demand treatment and control of bleeding episodes in adults 18 and older who have VWD.

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.

The National Hemophilia Foundation’s (NHF) Medical and Scientific Advisory Council (MASAC) has issued the latest revision to their most comprehensive treatment document, which is periodically updated to provide information on current bleeding disorder therapies available in the U.S. The new document, which is listed below, was approved by MASAC on April 19, 2018.

The designation is for people with hemophilia A without inhibitors.

Genentech has announced that the U.S. Food and Drug Administration (FDA) has granted “breakthrough” therapy designation to HEMLIBRA® for people with hemophilia A, without inhibitors. Breakthrough drugs are put on a fast-track approval program and given intensive guidance from the FDA. The therapy was co-developed by Genentech, Chugai and Roche.