A Message from NHF President and CEO Leonard A. Valentino, MD
Dear Community, Not a big surprise that the turning of the page in the calendar did not make all our worries go away. The big stories that consumed our thoughts at the end of last year—the election,...
View ArticleLooking Ahead to 2021
As we look ahead into the new year, and the changes it will bring, I’ve been reflecting on the importance of the events of 2020 and what we have learned. This past year, tumultuous and strange as it...
View ArticleNew Research Fellowship Available from NHF
The National Hemophilia Foundation has created a new research fellowship that seeks to create greater diversity in the field of benign hematology with the Jeanne M. Lusher Diversity Fellowship (JML)....
View ArticleOrganizations Develop Guidelines on the Diagnosis and Management of VWD
The American Society of Hematology (ASH), the International Society on Thrombosis and Haemostasis (ISTH), National Hemophilia Foundation (NHF), and World Federation of Hemophilia (WFH) have developed...
View ArticleMedscape Activity Designed to Prepare Clinicians for Arrival of Gene Therapy
“From Principles to Practice: Preparing for the Advent of Gene Therapy” represents the newest educational activity in Medscape’s series “Clinical Advances in Gene Therapy for Hemophilia.” Presented...
View ArticleSnapshots of VWD Guidelines
The new joint clinical practice guidelines on the diagnosis and management of von Willebrand disease, developed by the American Society of Hematology (ASH), the International Society of Thrombosis and...
View ArticleRecall Notice: Voluntary Recall Mononine Coagulation Factor IX (Human)
CSL Behring has announced a voluntary pharmacy level product recall of one batch of Mononine Coagulation Factor IX (Human), a plasma-derived product used to treat hemophilia B. CSL Behring’s...
View ArticleBioMarin Announces Positive Phase 3 Study Data for Valoctocogene Roxaparvovec
BioMarin recently announced positive updates from its ongoing phase 3 GENEr8-1 study of valoctocogene roxaparvovec, an investigational gene therapy for the treatment of adults with severe hemophilia A....
View ArticleACA Marketplaces to Reopen
On January 28th, 2021, President Biden signed an executive order aimed at stabilizing and strengthening the Affordable Care Act (ACA) and Medicaid. The President specifically stated that this order...
View ArticleWednesday Webinar February 2021 Speakers
NHF's Wednesday Webinars for February 2021 will feature an array of speakers and topics of interest to both healthcare providers and patients and families with blood disorders alike.February...
View ArticleThird National Patient Satisfaction Survey Launching Soon!
Come the Spring of 2021 patients and caregivers will be presented with a new opportunity to provide valuable feedback on the care they receive at hemophilia treatment centers (HTC) across the United...
View ArticleOctapharma Announces Final Results of Nuwiq® Study
Octapharma recently announced the final results from the NuProtect study, which evaluated the immunogenicity of Nuwiq® in previously untreated patients (PUPs) with severe hemophilia A.Nuwiq® is a...
View ArticleSpark Announces Preliminary Data from Investigational Gene Therapy Trial
Spark Therapeutics announced preliminary data from part one of their ongoing phase 1/2 open-label, non-randomized, dose-finding study of SPK-8016, the company’s investigational gene therapy...
View ArticleSanofi Revises Fitusiran Dosing Regimen to Mitigate Risk of Vascular Thrombosis
Joint statement from the European Hemophilia Consortium, the World Federation of Hemophilia, and the National Hemophilia FoundationFitusiran update following EAHAD 2021 Congress
View ArticleFDA Partially Rescinds Added Indications for Two FIX Products
The U.S. Food and Drug Administration (FDA) has partially rescinded a pair of supplemental Biologics License Applications (BLAs) the agency had granted, in error, for two recombinant factor IX...
View ArticleMarch 2021 Wednesday Webinar Schedule
NHF's Wednesday Webinars for March 2021 will feature an array of speakers and topics of interest to both healthcare providers and patients and families with blood disorders alike.March WebinarsAll...
View ArticleNew Program Looks to Standardize Care for Patients with Rare Diseases
The Children’s National Hospital and Takeda recently announced the creation of a new, first-of-its-kind program to help standardize and streamline the process of diagnosis and care for individuals with...
View ArticleA Refocused Mission for NHF Emphasizes Research
The National Hemophilia Foundation (NHF) is refocusing its mission statement to reflect a renewed emphasis on research and an expanded scope to include inheritable blood disorders.The newly adopted...
View ArticleNominations Open for the 2021 NHF Awards of Excellence
The National Hemophilia Foundation is now accepting nominations for its Awards of Excellence. These awards honor members of the bleeding disorders community who have made outstanding contributions to...
View ArticleNewly Updated MASAC Documents Dedicated to Females Affected by Bleeding...
The Medical and Scientific Advisory Council (MASAC) of the National Hemophilia Foundation (NHF) issued three new documents, all of which were adopted by NHF’s Board of Directors on March 4, 2021.
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