News


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.


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.