Newsroom


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.


The Senate Bill (BCRA) Will Hurt the Bleeding Disorders Community

Call TODAY and tell your Senator to vote NO on BCRA!

 

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:

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.

HTC Program Funding Needs Your Help!

We asked for your help last week and your rocket it! Your help is needed again -- HTC funding could be in jeopardy!

 

Let the Stars in Our Community Shine!

Help the heroes in our community get the recognition they deserve!

Guías Culturales are culturally intelligent volunteers who are the path to service to the bleeding disorders community, acting as “guides” to diverse members of the bleeding disorders community.

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 Letter to the House of Representatives

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 Today on ACA Repeal and Replace Bill

Call your Congressional Representative and share your concerns about AHCA.

340B Program Module Available through Partners in Bleeding Disorders Education

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.

Washington Days Brings Big Crowd to Capitol Hill

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.

This Could Be the Biggest Washington Days in Our History

On March 9th, join the more than 500 people with bleeding disorders advocating for access to healthcare.

The Red Tie Challenge, launched during Bleeding Disorders Awareness Month, aims to advance the fight against inheritable bleeding disorders by raising funds for NHF’s research, education and advocacy initiatives.

My Life, Our Future Opens World’s Largest Genetic Hemophilia Repository to Scientists

Resource aims to advance scientific understanding of rare bleeding disorder

and help improve patient outcomes.

Spark Therapeutics Announces Initiation of Phase 1/2 Trial

The trial is Spark's investigational gene transfer candidate for hemophilia A.

Statement from Genentech/Roche on HAVEN 1 Clinical Trial

A statement from Genentech/Roche regarding the death of a participant in the HAVEN 1 clinical trial.

Be Prepared for Washington Days

Coming to Washington Days? Learn what to expect and how to make the most out of your experience with NHF's 1 hour webinar.

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.

Bioverativ an Independent Company Spun off from Biogen

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.

Compassion Has No Borders

NHF offers guidance for those who may be affected by current travel restrictions.