If you want to be in the know about what’s going on at our organization, you’ve come to the right place!
Be sure to check back regularly to get our latest news updates.
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.
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.
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).
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.
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.
Spark reports that all participants have experienced “consistent and sustained increases in factor IX activity” following administration of SPK-9001.
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:
Scientists from the Center for Cardiovascular Research at the University of Hawaii (UH) have developed a novel approach to hemophilia gene therapy that employs microbubbles and an ultrasonic beam to deliver the treatment.
NHF CEO Val D. Bias shares this thoughts on the success of Bleeding Disorders Awareness Month 2017.
We asked for your help last week and your rocket it! Your help is needed again -- HTC funding could be in jeopardy!
Help the heroes in our community get the recognition they deserve!
Josh Gordy is a National Football League free-agent. Josh created these scholarships in honor of his nephew, Nolan, who has severe hemophilia A. Applicants must be individuals diagnosed with hemophilia who are entering or attending an accredited 2- or 4-year undergraduate institution in the United States for the 2017-18 school year.
Award amount: $1,000
Number of awards: 2
Registration opens: 4/24/2017
Registration closes: 5/31/2017
The deadline for the 2017 Kevin Child Scholarship (KCS) is Thursday, June 15, 2017. Applications, which need to be postmarked by June 15th, will be accepted from individuals diagnosed with either hemophilia A or B, and a high school senior with aspirations to attend an institute of higher education (college, university or vocational-technical school), or a college student already pursuing a post-secondary education. As part of the application, candidates will need to provide a personal essay, an official school transcript and a letter of recommendation.
The National Hemophilia Foundation’s (NHF’s) Nursing Working Group continues to revise and expand its Nurses’ Guide to Bleeding Disorders (NGBD). The latest chapter that has been updated is related to aging in the hemophilia population.
NHF has sent a letter to every member of the House of Representatives outlining concerns on the proposed legislation to repeal and replace the Affordable Care Act (ACA).
Call your Congressional Representative and share your concerns about AHCA.
The Partners in Bleeding Disorders Education Program is offering an educational module for healthcare providers at US hemophilia treatment centers (HTCs) who want to learn more about the 340B Drug Pricing Program.
Shire has announced a phase 3 clinical trial for ADYNOVATE®, the company’s recombinant factor VIII (FVIII) therapy designed using pegylation technology to extend FVIII time in circulation and increase FVIII exposure to enhance bleed prevention. The study is called “PROPEL,” a PROspective, randomized, multi-center study comparing the safety and efficacy of ADYNOVATE® following PK-guided prophylaxis targeting two different factor Eight trough Levels in subjects with severe hemophilia A.
On March 9th, more than 480 people came to the nation's capital to advocate for access to healthcare for people with bleeding disorders.
The Partners in Bleeding Disorders Education Program offers an educational module for health care providers at U.S. hemophilia treatment centers (HTCs) who want to better understand dental care as it relates to the comprehensive management of patients with bleeding disorders. The target audience for this activity are dental hygienists, dentists, nurses, and other health care professionals working on an HTC comprehensive care team.
On March 9th, join the more than 500 people with bleeding disorders advocating for access to healthcare.
Resource aims to advance scientific understanding of rare bleeding disorder
and help improve patient outcomes.
The trial is Spark's investigational gene transfer candidate for hemophilia A.
A statement from Genentech/Roche regarding the death of a participant in the HAVEN 1 clinical trial.
The Partners in Bleeding Disorders Education Program has relaunched an ethics-related educational activity for healthcare providers at hemophilia treatment centers (HTCs).
AbbVie recently announced that the U.S. Food and Drug Administration (FDA) has accepted its New Drug Application (NDA) and granted priority review for glecaprevir/pibrentasvir (G/P). G/P is the company’s investigational combination therapy regimen for the treatment of all major genotypes of the chronic hepatitis C virus (HCV). The once-daily, orally-administered therapy includes two distinct antiviral agents in a fixed-dose combination of glecaprevir, an NS3/4A protease inhibitor, and pibrentasvir, an NS5A inhibitor.
As of February 1, 2017, the new company, known as Bioverativ, became an independent global biotechnology company focused on hemophilia and other rare blood disorders.
uniQure investigational hemophilia B gene therapy receives breakthrough designation from FDA
NHF will showcase important bleeding disorder research currently being conducted by physicians, researchers and other healthcare professionals at the NHF 69th Annual Meeting in Chicago, IL
This update describes wellness not just in terms of the presence or absence of disease or illness but as a multidimensional collection of behaviors that contribute to the quality of life in a person with a bleeding disorder.
Tips for contacting your members of Congress to share how the repeal and replacement of the ACA will affect you or your family.
The winning artist will have $2,500 awarded toward their Walk team in 2017.
Healthcare professionals, register now for February CDC webinar on new NHF-McMaster hemophilia care guidelines.
Collaboration will enhance the development of gene therapy tools for people with hemophilia A and B.
NHF's update on the latest measures to repeal and replace the Affordable Care Act (ACA).
Proposals needed for development of a web-based data system for an international bleeding disorders registry.
New therapy is intended for patients with hemophilia A or B with inhibitors.
Green light means investigational therapy on adults can get underway in 2017.