If you want to be in the know about what’s going on at our organization, you’ve come to the right place!
Shire recently announced that the U.S. Food and Drug Administration (FDA) has approved the company’s recombinant von Willebrand factor (rVWF) product VONVENDI®, for perioperative management of bleeding in adults (age 18 and older) with von Willebrand disease (VWD). The therapy had already been approved for the on-demand treatment and control of bleeding episodes in adults 18 and older who have VWD.
Emicizumab-kxwh (HEMLIBRA, Genentech) was approved for use by the US Food and Drug Administration on November 16, 2017 for individuals with hemophilia A and inhibitors.
NHF's MASAC has issued the latest revision to their most comprehensive treatment document.
We compiled a list of six of the greatest books to read about giving back. These books inspire the altruistic lifestyle and show anyone can make an impact on the world.
The designation is for people with hemophilia A without inhibitors.
NHF is expanding its work with the bleeding disorders community around the world.
ICER is an independent and non-partisan research organization that evaluates the clinical and economic value of prescription drugs, medical tests, and other healthcare and healthcare delivery innovations.
Grifols, S.A. recently announced that in 2017, the company donated over 25 million international units (IU) of factor products used to treat hemophilia A and B. According to a recent press release, the donation is part of Grifols’ commitment to provide a minimum of 200 million IU of factor to the World Federation of Hemophilia (WFH) Humanitarian Aid Program over a span of eight years – Grifols began this commitment in 2014. The company expects to make an additional donation of nearly 25 million IUs in 2018.
Earth Day 2018 is the perfect opportunity to get involved with your community and take care of our Earth. Let’s talk about some ways to go green for Earth Day 2018.
National Hemophilia Foundation CEO Val D. Bias spoke to the leaders of NHF’s 52-chapter networks at the NHF 2018 Chapter Leadership Seminar in San Francisco, California.
If you want to live a more altruistic life, but aren’t sure where to start, then you’ve come to the right place. Here’s how to find a cause you care about.
When it comes to living an altruistic lifestyle, there are lots of ways to get involved this National Poetry Month. Today we dive into a few ideas to get started.
2018 marks NHF’s 70th year as the bleeding disorders community’s chief advocate.
Applications are now open! The selected KCS recipient will receive an award of $1,000 toward their tuition costs.
Updated statement from Genentech on Hemlibra, March 28, 2018.
Rockville, Maryland-based Precision BioLogic is collaborating with Roche and Genentech on the development of a new diagnostic kit for inhibitor testing of individuals with hemophilia A. The modified Nijmegen-Bethesda Assay (MNBA) screening kit was developed for broad utility for both laboratories seeking a standardized inhibitor assay for clinical management and multi-center clinical studies of patients with hemophilia A.
NHF received information from Genentech’s Clinical Development Lead regarding reports of the death of patients utilizing Hemlibra (emicizumab).
“Advances in Managing Inhibitors in Patients with Hemophilia A,” is the newest educational opportunity to become available through Medscape. It is intended for hematologists, pediatricians, nurses and physicians specializing in emergency medicine. The goal of the activity is to discuss recent advances in the understanding of inhibitors in patients with hemophilia A, including the risks associated with inhibitors as well as current and new approaches to management.
Upon completion of this activity, participants will have increased knowledge of:
Turns out, helping others can actually help you live longer. You heard that right: the key to a long and fruitful life might exist in what you give, not in what you get.
Aptevo Therapeutics recently announced patient-reported data on individuals currently being treated with IXINITY®, the company’s recombinant factor IX product. IXINITY® is indicated for the control and prevention of bleeding episodes and for perioperative management in adults and children, 12 years of age or older, with hemophilia B. The results were presented at the Thrombosis and Hemostasis 2018 Summit of North America, held in on March 8-10, 2018 in San Diego, CA.
CSL Behring Discontinues Production and Distribution of Monoclate-P®
How can you enjoy the new sunshine of the season? Here are some ideas for how to live your best altruistic life and celebrate sunshine on the first day of spring.
The study focused on disparities associated with bleeding symptoms, age at diagnosis and provider interventions for females with bleeding disorders.
National Plant a Flower Day is the perfect start to the new season, so if you want to get involved, there are a few ways to join. Here’s how you can give back today.
Novo Nordisk recently announced that they have submitted a Biologics License Applications (BLA) to the U.S. Food and Drug Administration for N8-GP (tuco-tuco alfa pegol), a recombinant, extended half-life factor VIII (FVIII) product intended for the prevention and treatment of bleeding in people with hemophilia A.
Today we dive into the history behind this month and how you can get involved, give back and build a better world by celebrating National Women’s History Month.
If you or someone you care for had contact with an HTC in 2017, your feedback is needed!
Here are some hows, whys and benefits of supporting small businesses for your altruistic lifestyle.
Barry Haarde was a cyclist and community activist whose strength will never be forgotten.
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, 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.
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.
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.
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.
But it is not our story -- it's yours.