Newsroom


If you want to be in the know about what’s going on at our organization, you’ve come to the right place!


There are lots of worthy nonprofits out there who need financial support, so how can you pick just one? Today, we're here to help you learn how to choose the right charity for donating.

The program will allow bleeding disorders camp staff learn from one another and share best practices.

The Partners in Bleeding Disorders Education Program recently launched an updated version of “Dear Diary: The Importance of Infusion Logs in Home Infusion Therapy.” This activity aims to enable the learner to apply knowledge of the benefits and applications of paper and electronic infusion logs to support their accurate use among hemophilia patients engaged in home infusion.

Alnylam Pharmaceuticals, Inc. and Sanofi Genzyme announced positive results from an ongoing Phase 2 open label extension (OLE) study with fitusiran in patients with hemophilia A and B, both with or without inhibitors. Details from the study were presented at 26th International Society on Thrombosis and Haemostasis Meeting, July 8-13, 2017, in Berlin, Germany.

Shire Submits IND Application for Hemophilia A Gene Therapy Candidate

If effective, the therapy prompts the sustained production of FVIII and enhanced protection from bleeds.

Shire has announced the submission of an investigational new drug (IND) application to the U.S. Food and Drug Administration (FDA) for SHP654, an investigational factor VIII (FVIII) gene therapy for the treatment of hemophilia A.

Volunteering with elderly neighbors is an excellent way to get involved, support your community and find fulfillment. Check out these five benefits of volunteering with senior citizens.

Genentech Announces Progress in Two Phase III Emicizumab Studies

Results showed a statistically significant and clinically meaningful reduction in bleed rate, reports states.

If you want to celebrate this Independence Day with an altruistic twist, check out some of these ideas for how you can give back to your community near and far.

Bleeding Disorder Organizations Unite in Opposition to BCRA

NHF, HFA, the Hemophilia Alliance and Coalition for Hemophilia B are united in their opposition to BCRA because of its damaging impact on our community and urge the Senate to reject these harmful policies.

When things are busy, wellness often takes a backseat to other priorities. Luckily, today we thought of a couple ways to bring it back to the forefront of your life.

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

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

 

If you’re looking for a way to get in shape and get involved in the community, we’ve got you covered. Here are five reasons to run for a charity this summer.

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.

How can we celebrate this day while remembering those among us in different situations? Today we’re going to talk about how to give Dad the gift of altruism this Father’s Day.

While every individual is unique and has their own preferences, there are some general guidelines to follow when interacting comfortably and respectfully with people with disabilities.

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.

This Memorial Day, we remember and honor the men and women who have served our country’s armed forces—specifically those who have given the ultimate sacrifice.

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.

No matter what your job is, it’s an chance to connect and come together. If you want to use your work for others, check out four ways you can give back at work.

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.

How can you celebrate Peace Officers Memorial Day and National Police Week and pay homage to officers around the country? Here are some ideas to get started.

Storytelling is powerful, and it has enormous benefits in store for you and those around you. Today we're going to talk about how storytelling can impact your life.

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.

Today can be an opportunity to plant the seed of altruism. If you want to make your May Day meaningful, check out these ideas for how to share the gift of altruism today.

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.

Paying it forward is a way to spread goodness into the world. If you want to get involved this International Pay It Forward Day, check out these ways to pay it forward.

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.

Whether it's a few hours or a long commitment, volunteering not only supports those around you, but positively influences you as well. Here's six ideas to get started.

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.

Homelessness is a significant issue which plagues our community and the world. With such a huge challenge, how can we as individuals make a difference?

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.