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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!


How can you honor Presidents’ Day in your everyday life and your family’s life? We have some ideas. Check out these six altruistic ways to celebrate Presidents’ Day.

Registration is now open for the National Heart, Lung, and Blood Institute (NHLBI) State of the Science Workshop, Factor VIII Inhibitors: Generating a National Blueprint for Future Research. The goal of the workshop is to solicit hemophilia community-wide input into a coordinated national blueprint for future basic, translational, and clinical research focused on factor VIII immunogenicity and factor VIII inhibitor prevention and eradication.

Investigators at the Children’s Hospital of Los Angeles (CHLA) recently published a retrospective review of patient clinical data, the findings of which reflect a series of largely successful transitions to extended half-life (EHL) therapies. The data was drawn from patients treated at CHLA’s Hemostasis and Thrombosis Center (HTC).

Steven Pipe, MD

Steven Pipe, MD, NHF's Chair of MASAC, looks at the future of bleeding disorders treatment.

Valentine’s Day can be more than just romantic love, but true, kind, caring love for your neighbors and those in need. How can you lead a more altruistic life this week?

Novo Nordisk recently announced the availability of REBINYN®, the company’s recombinant GlycoPEGylated product for the treatment of adults and children with hemophilia B (factor IX deficiency). The therapy was first approved by the U.S. Food and Drug Administration in May of 2017.

REBINYN® is indicated for on-demand treatment and control of bleeding episodes, and the perioperative management of bleeding in adults and children with hemophilia B. It is not indicated for routine prophylaxis or for immune tolerance induction in patients with hemophilia B.

Black History Month is a time to remember, celebrate and commemorate the achievements and contributions by African-American men and women throughout U.S. history.

This webinar is free and open to public health professionals, clinicians, and researchers who want more information about hemophilia.

It’s true: with a lack of Vitamin D and little time spent outdoors, the winter months can literally make you sad.

On March 1, 2018, the National Institutes of Health (NIH) will recognize Rare Disease Day®, which is dedicated to raising awareness about rare disorders, the communities affected by them and current research collaborations in relevant scientific fields. According to the NIH, rare diseases affect an estimated 25 million people in the United States. The annual event is sponsored by the National Center for Advancing Translational Sciences (NCATS) and the NIH Clinical Center (NIHCC).

Luckily, maintaining a habit is doable when set up for success. If you want to be start (and keep) a healthy new habit this year, check out these useful tips.

flooded neighborhood

Plan for the unexpected with these emergency preparendness resources.

The National Hemophilia Foundation (NHF) is excited to announce the availability of a new educational webinar created to improve the overall knowledge of physicians in evaluating and screening women and girls with heavy menstrual bleeding for a bleeding disorder. 

If you want to live a more altruistic life, how can you commemorate Dr. King and continue his legacy? Here are ideas to get started this Martin Luther King Jr. Day.

hands holding files

In the past few weeks, we have received many inquiries regarding the scope of the injunction Shire is seeking in its lawsuit against Genentech/Roche.

helping hands

The Patient Access Network (PAN) Foundation announces a new patient insurance premium assistance program for individuals with hemophilia.

The Patient Access Network (PAN) Foundation has opened a new patient assistance program for individuals with hemophilia. PAN is an independent, national 501 (c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic and rare diseases with out-of-pocket costs for their prescribed medications. The program was announced in a PAN press release on January 9, 2018.

The Patient Access Network (PAN) Foundation has opened a new patient insurance premium assistance program for individuals with hemophilia. PAN is an independent, national 501 (c)(3) organization dedicated to helping federally and commercially insured people living with life-threatening, chronic and rare diseases with out-of-pocket costs for their prescribed medications. The program was announced in a PAN press release on January 9, 2018.

NHF CEO Val D. Bias

But it is not our story -- it's yours.

Pipettes

Trial investigators will evaluate MarzAA’s ability to curb spontaneous bleeding episodes in patients.

With 2018 underway, how can you celebrate National Blood Donor Month? Check out a few ideas for how you can roll up a sleeve and give through January and the year.

Medscape recently launched a new education opportunity for healthcare providers. “Hemophilia 2018: Current and Emerging Therapies” is a discussion focused on the latest advances in the management of hemophilia, including the evolving role of extended half-life factor products, emerging data on small molecule approaches and gene therapy. The activity, which centers on a video recording of a live presentation at the 2017 American Society of Hematology Annual Meeting, is intended for hematologists, pediatricians, and other healthcare professionals who treat patients with hemophilia.

Medscape recently launched a new education opportunity for healthcare providers. “Hemophilia 2018: Current and Emerging Therapies” is a discussion focused on the latest advances in the management of hemophilia, including the evolving role of extended half-life factor products, emerging data on small molecule approaches and gene therapy. The activity, which centers on a video recording of a live presentation at the 2017 American Society of Hematology Annual Meeting, is intended for hematologists, pediatricians, and other healthcare professionals who treat patients with hemophilia.

The activity reviews current treatment options for hemophilia A, challenges to optimal treatment, and future research directions.

New year’s resolutions are a great way to focus your year on things other than yourself—to focus on living a more altruistic lifestyle and giving back to others.

If you and your family wants to focus on giving back to others this Christmas, here are some ideas for how to start a more altruistic Christmas tradition.

NHF Statement on Shire Injunction Filing on Roche/Genentech

NHF is aware that recently Shire sought an injunction against Roche/Genentech.

BioMarin Reports Positive Gene Therapy Trial

BioMarin provided a series of updates on their investigational hemophilia A gene therapy candidate valoctocogene roxaparvovec.

Survey for African Americans and Latinos with Hemophilia and VWD Type III

People who are African-American or Latinx and have hemophilia A or B, or VWD type 3 are at an increased risk of developing an inhibitor.

FDA Lifts Hold on Fitusiran Trials

The FDA has lifted a hold on clinical studies involving the investigational therapy fitusiran.

We’ve compiled a list just for you on last minute gift ideas that give back. Try some of these out to celebrate the holidays more altruistically this year.

In a recent press release Shire announced that they have entered into a collaboration agreement with Rani Therapeutics. This agreement allows Shire to conduct research on the use of Rani Pill™ technology for the oral delivery of factor VIII (FVIII) therapy for patients with hemophilia A. As part of the agreement, Shire obtains exclusive rights to conduct research on, evaluate, and pursue a worldwide, exclusive license for the development and commercialization of such a therapy.

Spark Therapeutics provided clinical trial updates on the company’s investigational gene therapies for hemophilia A and B, known respectively as SPK-8011 and SPK-9001. The updates were presented at the recent 59th American Society of Hematology (ASH) Annual Meeting and Exposition, which was held December 9-12, 2017 in Atlanta, GA.

NHF Healthcare Update: Congressional To-Do List

Congress has a lengthy to-do list before the end of the year.  NHF is closely monitoring numerous issues affecting the bleeding disorders community including:

Tax Reform

Do you want more opportunities to give to your community? We’ve compiled a list of holiday fundraiser ideas to get involved in yourself or along with other altruistic causes.

Results in HEMLIBRA® Study for Patients Without Inhibitors

Genentech recently reported results from the phase III HAVEN 3 study, which showed that the prophylactic use of HEMLIBRA® led to significantly reduced bleeds in adult and adolescent patients with hemophilia A, without inhibitors. The therapy was co-developed by Genentech, Chugai and Roche.

It's Not Too Late: Take Action on Tax Reform

 

 

NHF Announces the 2017 NHF/Novo Nordisk Career Development Award Recipient

NHF is pleased to announce Christopher J. Ng, MD, Assistant Professor of Pediatrics, University of Colorado Denver, as the recipient of the 2017 NHF/Novo Nordisk Career Development Award (CDA).

As we dive into the season of giving this month, let’s explore how the very action of giving can lead to a more altruistic life, improve our mood and even makes us happy.

The Partners in Bleeding Disorders Education Program recently launched “Psychosocial Considerations in Bleeding Disorder Care: Birth to Preadolescence.” This online learning activity is focused on the developmental and psychosocial issues unique to children with bleeding disorders, specifically those from infancy through preadolescence. The activity also encompasses the psychosocial considerations that may be seen in families of affected children.     

Action to Hope Study Open to Hemophilia Community

The study seeks to shed light on the barriers people with hemophilia who are obese or overweight have to losing weight.

The National Hemophilia Foundation (NHF) would like to make healthcare providers aware of three monographs that are available through NHF’s resource center HANDI. Each booklet is devoted to a key subject in bleeding disorders management, including the genetics of hemophilia, von Willebrand disease and inhibitors in hemophilia.

With Thanksgiving behind us and the winter holidays coming up, how can you make others feel warm during the cold season? We have some ideas to get you started.

Swedish Orphan Biovitrum (Sobi) recently announced the successful enrollment of the first hemophilia A patient in the company’s ReITIrate clinical trial. The phase 4 study, which is being sponsored by Sobi and Bioverativ Therapeutics, is designed to evaluate the use Eloctate™ for immune tolerance induction (ITI) therapy in hemophilia A patient with inhibitors. ITI is an effective approach to inhibitor eradication in which the body begins to tolerate a therapy after daily doses of factor are administered over time.

The U.S. Food and Drug Administration (FDA) has granted orphan drug designation to TRM-201 (rofecoxib), a class of COX-2 selective non-steroidal anti-inflammatory drug (NSAID) for the treatment of hemophilic arthropathy. Rofecoxib is manufactured by Cambridge, Massachusetts-based Tremeau Pharmaceuticals. A start-up company, Tremeau is focused on developing nonopioid pain treatments for rare diseases.

Gratitude is about more than taking a second to say “Thanks.” Gratitude shows true appreciation. This Thanksgiving, we have some ideas for how you can give gratitude.

FDA Approves SubQ Treatment for Hemophilia A with Inhibitors

The U.S. Food and Drug Administration (FDA) has approved HEMLIBRA® (emicizumab) for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children with hemophilia A with factor VIII inhibitors.

Call to Action on Senate Tax Plan

Call your Senators now and share how the tax reform proposal will harm the bleeding disorders community.

THSNA Summit Coming in March 2018

Learn about the most current clinical and scientific issues related to hemostasis and thrombosis.