Newsroom


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


Thanksgiving marks an important season for all of us to take a moment and remember the little things in life—and every little thing we’re thankful for.

If you have a student in your life who you want to serve the community, here are some tips for how to encourage teenagers to volunteer with a cause they care about.

Caregiving is a valuable position in our community which often goes unrecognized. Let's look at what National Family Caregivers Month is and how you can celebrate it.

If you strive to live an altruistic lifestyle, there are lots of ways to help out this Halloween. Here are some top tricks to make Halloween a treat for everyone.

How can you encourage the children in your life to be active and volunteer with their community? We have some ideas for how to get kids involved in giving back.

There are plenty of ways to get involved in your community. To get you started, we came up with six spooky-fun volunteering ideas for October.

Books are a valuable source of information, creativity and empathy. If you're not a book lover now, you will be soon. Here's how reading makes you a better person.

Hemlibra® Receives Expanded FDA Approval for Hemophilia A Patients Without Inhibitors

The Genentech therapy has been approved for routine prophylaxis in adults and children with or without factor VIII inhibitors.

The National Hemophilia Foundation (NHF) is pleased to announce the 2018 NHF-Shire Clinical Fellowship award recipients: Hanny Al-Samkari, MD, of Boston Hemophilia Center/Massachusetts General Hospital and Harvard University, and Michael H. White, MD, of Emory University and Children’s Healthcare of Atlanta (CHOA).

How can you get involved? If you want to join the fight against breast cancer, we have some ideas for how you can support Breast Cancer Awareness Month.

Fall is upon us as crisper, cooler weather prevails across much of the country. It is arguably the season most evocative of change, and in that spirit NHF’s information resource center HANDI would like to share several resources that may offer guidance as you or a family member face a major life transition.

HANDI hopes that you find these resources to be helpful and informative!

If you want to live a more altruistic lifestyle, take advantage of the season of fall to dive into getting involved. Here are five fun ways to give back this fall.

Copay Accumulator Patient Impact

Watch this video to learn how Copay accumulator adjustments affect patients requiring specialty medications with no generic alternatives.

Two hundred thirty-one years later, the Constitution is still an active document for our country. So, how can you celebrate and honor this historic day?

The National Heart, Lung, and Blood Institute (NHLBI) is currently seeking public feedback that will inform future research the agency will conduct on inhibitors to factor VIII (FVIII) in patients with hemophilia A. To this end, the NHLBI has released a Request for Information (RFI) to solicit perspectives and comments from the bleeding disorders community on potential strategies, scientific opportunities and priorities, and the requisite infrastructure to optimize inhibitor research.

As individuals with hemophilia live longer and reach life expectancy rates comparable to the general population, their healthcare providers will continue to encounter clinical challenges inherent in treating and managing aging patients, including cardiovascular disease (CVD). There are several established risk factors associated with CVD such as hypertension, overweight, obesity and an abnormal lipid profile.

Medscape has launched a new educational activity in their “Clinical Advances in Gene Therapy for Hemophilia” series, which is presented through a collaboration between Medscape, the National Hemophilia Foundation, the European Haemophilia Consortium and the World Federation of Hemophilia. The program is supported by an independent educational grant from BioMarin.

If you strive to live an intentionally altruistic lifestyle, you’ve come to the right place to learn more. Here are seven ideas for random acts of kindness.

When it comes to giving back, Labor Day is the perfect chance to do something valuable for others. Here are some ideas for how you can get involved this Labor Day.

Bayer receives FDA approval for hemophilia A treatment

Bayer received FDA approval for new extended half-life hemophilia A product for patients 12 yrs and older.

Fundraisers are an important way to give back to your school and raise money to support causes you care about. However, fundraisers aren’t the only way to get involved.

The new vial size will reduce the reconstitution time that was needed to prepare multiple vials for a similar dose.

The therapy is for people with severe and moderately severe hemophilia B.

Whether they’re your closest family or a complete stranger, there are lots of simple ways to bring joy to others every single day. So, we came up with 10.

Catalyst Updates on Phase 2/3 Trial of Subcutaneous Therapy

Catalyst Biosciences recently announced updated positive interim data from a phase 2/3, multinational clinical study of marzeptacog alfa (MarzAA), a subcutaneously administered factor VIIa therapy. MarzAA is being developed by Catalyst for the prophylactic treatment of individuals with hemophilia A or B with inhibitors.

NHF 70th: Pursuing discovery of the next generation of therapies

An interview with one of the recipients of NHF's Innovative Investigator Awards

NHF 70th: Pursuing discovery of the next generation of therapies

An interview with one of the recipients of NHF's Innovative Investigator Awards

If you live an altruistic life and donate to an organization or cause you care about, you might be surprised to find these life benefits from financial donating.

Sangamo Therapeutics, Inc. recently announced positive preliminary data from the Phase 1/2 clinical trial designed to evaluate SB-525, the company’s gene therapy program for people with hemophilia A, or factor VIII (FVIII) deficiency. SB-525 is being developed as part of a global collaboration between Sangamo and Pfizer for the development and commercialization of hemophilia A gene therapy programs.

Spark Reports Progress on Hemophilia A Gene Therapy Candidate

The therapy is administered via a one-time intravenous infusion, which is designed to elicit the production of therapeutic levels of factor VIII.

Court Rules on Shire/Roche Preliminary Injunction

The preliminary injunction was part of an ongoing patent lawsuit.

New Medscape Activity Features the Science Behind Gene Therapy

The activity will examine the technology behind the emerging approaches to gene therapy in hemophilia.

If you want to take advantage of the last summer days and commemorate Family Fun Month with your loved ones, here are four ideas to celebrate this August.

Shire is discontinuing the manufacture and distribution of BEBULIN®, the company’s factor IX human plasma-derived prothrombin complex concentrate product. BEBULIN® is indicated for the prevention and control of bleeding episodes in adult patients with hemophilia B. The National Hemophilia Foundation has been notified by Shire that this decision was based on the reduced demand and is not connected with any new safety or efficacy findings in relation to the therapy.

Whether you make friends with your next door neighbor, community member or someone who lives halfway across the world, you can celebrate International Day of Friendship. Here’s how.

Healthcare providers interested in broadening their knowledge of the science and clinical management of inhibitors are enthusiastically invited to participate in NHF’s webinar on “Current Research and Future Approaches to Eradicating Inhibitors in Hemophilia.” This CME and CNE-accredited activity reviews the basic science behind the development of inhibitor antibodies to treatment for hemophilia, the associated management complications and current barriers to research.

A new patient financial assistance program has become available for individuals with hemophilia. The Assistance Fund (AF) is a charitable foundation that was created to provide eligible patients with chronic diseases help with paying medication copayments, coinsurance, deductibles, insurance premiums and incidental medical expenses.

As “the dog days” of August approach, Autumn may still seem a long way off. Though with a quick glance of the calendar, we see that colleges begin their class terms earlier and earlier and Fall semester is right around the corner! Whether going away or staying closer to home, being a first-year college student can be a time fraught with great excitement, anticipation and perhaps some trepidation about this next big step. HANDI, NHF’s information resource center, would like to highlight several resources aimed at helping new college students in this transition.

When you have an efficient morning routine, you set an effective tone for the rest of the day. Here are five ways to establish a productive morning routine.

NHF Comments on Trump Administration Drug Pricing Blueprint

NHF submitted a letter on the "American Patients First" drug pricing blueprint.

HTRS

The HTRS MRA provides financial support for qualified fellows or junior attending/junior faculty pursuing clinical, translational, or basic science research in hemostasis and/or thrombosis under the guidance of an experienced mentor.

Study Shows Impact of Missing HTC Clinic Visits

New study from Emory University School of Medicine focused on causes and ramifications of missing clinic visits in patients with bleeding disorders.

The rate of attendance to scheduled clinic visits have been linked to health outcomes in several chronic disease groups such as diabetes, hypertension, HIV and congenital heart disease. Higher clinic attendance rates are generally associated with better outcomes in these patients. However, the potential effects of non-attendance (NA) for individuals with bleeding disorders is not well understood.

Pfizer Initiates First Stage of Phase 3 Hemophilia B Gene Therapy Trial

The first stage will collect data that will be eventually used to evaluate the efficacy and safety of the investigational hemophilia B therapy.

There’s more to Global Hug Your Kids Day than just giving your kiddos a hug or two. If you want to celebrate today, here are some fun ideas to get you started.

Setting goals is simple. We’ve all heard different phrases, acronyms and ways to properly set a goal for life. However, accomplishing goals can be a whole different task.

Advanced Considerations for the Recognition, Appropriate Diagnosis, and Timely Management of von Willebrand Disease and Other Bleeding Disorders among Women in Non-Hematology Health Care Settings

Take part in a survey to shape VWD Guidelines. We want to hear from people with VWD, people who care for those with VWD, or clinicians and other healthcare professionals who treat people with VWD.

Do you want to make a difference and give back to your community this holiday week? Check out our list of volunteering ideas for you to try on the Fourth of July.

A recent article appearing in the journal Haemophilia, includes updates on the My Life Our Future (MLOF) project, which was established in 2012 to offer U.S. hemophilia patients ready access to free genotyping, a type of genetic testing that is often hard to access, expensive and not covered by insurance. MLOF is a partnership between the American Thrombosis and Hemostasis Network (ATHN), the National Hemophilia Foundation (NHF), Bloodworks Northwest and Bioverativ (formerly Biogen).

Medscape has launched the latest educational activity in their “Clinical Advances in Gene Therapy for Hemophilia” series, which is presented through a collaboration between Medscape, the National Hemophilia Foundation, the European Haemophilia Consortium and the World Federation of Hemophilia. The program is supported by an independent educational grant from BioMarin.