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.


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.

FDA Gives Breakthrough Designation toHemophilia Gene Therapy

uniQure investigational hemophilia B gene therapy receives breakthrough designation from FDA

Call for Poster Abstracts

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

Wellness in People with Bleeding Disorders Updated in Nurses’ Guide

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.

CDC Public Health Webinar on NHF Guidelines

Healthcare professionals, register now for February CDC webinar on new NHF-McMaster hemophilia care guidelines.

GenVec and WU Enter Hemophilia Therapies Agreement

Collaboration will enhance the development of gene therapy tools for people with hemophilia A and B.

Update on Congressional Actions Regarding the Affordable Care Act

NHF's update on the latest measures to repeal and replace the Affordable Care Act (ACA).

Request for Proposals: WFH World Bleeding Disorders Registry

Proposals needed for development of a web-based data system for an international bleeding disorders registry. 

FDA will Review LFB's Application for Recombinant Factor VIIa Therapy

New therapy is intended for patients with hemophilia A or B with inhibitors.

Sangamo Receives FDA Approval for Hemophilia A Gene Therapy Trial

Green light means investigational therapy on adults can get underway in 2017.

BioMarin’s Hemophilia A Gene Therapy Trial Demonstrates Increased FVIII Levels

Results of the ongoing clinical trial of BMN 270 in human subjects provide encouraging outcome so far.

Nurses' Guide Updates Travel Planning Chapter

Nurses can find out more about how best to prepare patients for travel, whether for business or pleasure.

Genentech's Subcutaneous Therapy Performing Well in Study

Emicizumab trial shows significant improvements in reducing bleeds in people with hemophilia A and inhibitors.

If you are 50 or older with hemophilia then take the online survey or call 1-800-999-0913 to take it over the phone.

Octapharma Reports Data on Inhibitor Rates in Nuwiq® Trial

Results of recombinant product on previously untreated patients provide data on inhibitor development.

New Medscape Activity on Adolescents and Sports

Strategies to help healthcare providers communicate with teens with hemophilia who want to play sports.

UniQure’s Hemophilia B Gene Therapy  Performs Well in Clinical Trial

Significant improvements seen in the patients in the trial, some of whom were followed for one year.

CMS Cancels Controversial Medicare Part B Demo

NHF submitted comments on the proposal expressing concerns about how it could limit access to clotting factor.

CSL Behring Presents Data on Therapeutic Potential of Idelvion®

Experimental hemophilia B therapy shows evidence of better bleed control when the trough level is higher.

Applications open for Travel Grants to NHF's Annual Meeting in Chicago / Abiertas las aplicaciones para becas de viaje a la Reunión Anual de NHF en Chicago

Connections for Learning Travel Grant applications open on Tuesday, December 20th. Plan ahead for NHF's 69th Annual Meeting in Chicago in August 2017 / Las becas de viaje de Conexiones para el Aprendizaje abren el martes, 20 de diciembre. Planifique con anticipación la 69ª Reunión Anual de NHF en Chicago en agosto de 2017.

Connections for Learning Travel Grant applications open on Tuesday, December 20th. Plan ahead for NHF's 69th Annual Meeting in Chicago in August 2017.

Biogen Reports ELOCTATE™ Shows Positive Implications for Quality of Life

Recombinant extended half-life therapy stretches infusion intervals and improves quality of life across different ages tested.

Alnylam Reports Progress on Investigational Subcutaneous Hemophilia Therapy

Alnylam Pharmaceuticals, Inc. reports positive interim results from a part of its ongoing Phase 1 study with fitusiran in patients with hemophilia A and B with inhibitors.

Find out out this new conference for individuals and families coping with inhibitors provided for so many of their needs.

Message from Val Bias Regarding HIV/AIDS Memorial

NHF, Hemophilia Federation of America (HFA), The Committee of Ten Thousand (COTT) and the National AIDS Grove have collaborated to create a permanent memorial for the members of the hemophilia community who were affected by HIV/AIDS,

Medscape Activity Focuses on Optimizing Hemophilia Treatment Guidelines

This educational opportunity for healthcare providers enhances their knowledge and application of hemophilia treatment guidelines.

Medscape Activity Focuses on Joint Health

The latest educational opportunity for healthcare providers increases knowledge and competence in dealing with patients' joints.

Spark Reports Positive Data from Hemophilia B Gene Therapy Program

Gene therapy clinical trials eliminate infusions in some patients and improve quality of life.

Planning to Renew or Enroll in the Healthcare Marketplace for 2017?

December 15th is the deadline to enroll in or change plans for coverage starting January 1, 2017. Take time to review your coverage today.

Sangamo Reports Hemophilia A Gene Therapy Progress at ASH

Trials of Sangamo's gene therapy called SB-525 show promising results in animals with hemophilia A.

We Did It! My Life, Our Future Enrolls 5,000 Participants in Research Repository

You helped My Life, Our Future, the genotyping initiative, reach a milestone in hemophilia research.

Imagine being able to pop a few capsules in your mouth and be protected from bleeds the way infusions now do. That’s the goal of investigators in the Cockrell School of Engineering at The University of Texas at Austin.

The new oral delivery system uses micro- and nanoparticles to carry a protein therapy that treats hemophilia B, or factor IX deficiency. The findings were published in the November 30 issue of the International Journal of Pharmaceutics.

Octapharma Announces Two New Clinical Trials

WILATE®, a human-derived von Willebrand factor/coagulation factor VIII therapy, will be used in two upcoming clinical trials slated to launch in December 2016.