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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 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 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.
An interview with one of the recipients of NHF's Innovative Investigator Awards
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.
The therapy is administered via a one-time intravenous infusion, which is designed to elicit the production of therapeutic levels of factor VIII.
The preliminary injunction was part of an ongoing patent lawsuit.
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 submitted a letter on the "American Patients First" drug pricing blueprint.
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.
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.
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.
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.
Fortunately, there are a few ways and practices to grow in your communication skills. Here are healthy habits you can try to become a strong communicator.
The goal of this effort is to create and maintain state-of-the-art guidelines on the diagnosis and management of VWD.
Catalyst Biosciences, Inc. recently released an update relevant to an ongoing Phase 1/2 clinical trial for CB 2679d/ISU304, the company’s investigational therapy for the treatment of patients with severe hemophilia B/factor IX (FIX) deficiency. Catalyst develops its therapies using engineered proteases, enzymes that increase the rate of chemical reactions within cells. These proteases can target the proteins associated with certain underlying diseases and conditions, such as FIX.
Because of their lower factor levels, hemophilia patients are generally thought to be better protected from cardiovascular disease (CVD). To determine whether data would support this long-held assumption, a team of investigators enrolled patients from 19 U.S. hemophilia treatment centers (HTCs) in the “CVD in Hemophilia” study. The lead author of the study was Barbara Konkle, MD, Professor of Medicine in the Division of Hematology at the University of Washington School of Medicine in Seattle, WA.
Investigators looked into whether having hemophilia protected patients against cardiovascular disease.
If you’re considering volunteering with a cause you care about in the community, consider the benefits you can receive. Here are the top eight benefits of volunteering.
Grifols Announces Recall of One Lot of Profilnine. This recall is being conducted as a precautionary measure.
Caring for animals is an important part of living an altruistic lifestyle. Today we explore how you can live more altruistically with the animals in your day-to-day life.
The new web portal for patients and caregivers is intended to provide timely and accurate information on targeted serious adverse events of interest for HEMLIBRA.
This priority review is specifically for adults and children with hemophilia A without FVIII inhibitors.
Roche Holding AG announced that the U.S. Food and Drug Administration (FDA) has granted “priority review” to HEMLIBRA® a subcutaneously administered therapy currently being investigated for the treatment of patients with hemophilia A, without factor VIII (FVIII) inhibitors. The therapy, which is co-developed by Genentech, Chugai and Roche, is already FDA-approved for routine once-weekly prophylaxis to prevent or reduce the frequency of bleeding episodes in adults and children with hemophilia A with FVIII inhibitors.
CSL Behring recently announced that the US Food and Drug Administration (FDA) has approved a new 3500 IU (international unit) vial size for the company’s recombinant factor IX (rFIX) product Idelvion®. Idelvion combines or “fuses” recombinant factor IX (rFIX) with albumin, a protein found in blood plasma that helps factor IX stay active in the bloodstream longer.