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


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.

Keep America Beautiful Month is about coming together to give back to our beautiful country. This month, you can try some of these activities to support your community.

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.

Despite their age, children can have a powerful impact in the community, if only we encourage them to do so. Here are four reasons kids should start volunteering young.

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.

If you’re looking for cool ways to donate your gently used items, check out this list of things you can and should donate, and some unique ideas of where to give them.

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.

By going green, we create a better environment for ourselves and future generations. Check out these easy ways you can live an altruistic—and green—lifestyle.

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.

This Women’s History Month, get involved by showing support for the women in your community. Check out these ways you can remember powerful women from history, while advocating for women today.

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.

If you’re a college student looking for something more satisfying to do with your time, consider an alternative spring break: volunteering your time and talents for the benefit of others.

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.