Skip to main content


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.

Sanofi Publishes Updates to BIVV001 Trial

BIVV001 is a novel, investigational recombinant factor VIII therapy developed for the prevention of bleeding episodes in hemophilia A patients via once weekly prophylactic infusions.

NHF is Charting a Course for the Future

Your input will ensure that NHF is meeting your needs.

Mononine ® was first introduced as treatment available to hemophilia B patients in 1992.

NHF's Board of Directors Meeting

The National Hemophilia Foundation will be holding our quarterly Board of Directors meeting on Saturday, October 10th at 9:00 AM EDT.

Hemlibra® is a subcutaneous injection currently indicated for routine prophylaxis to prevent or reduce the frequency of bleeding episodes in adult and pediatric patients ages newborn and older with hemophilia A with or without factor VIII inhibitors.

The Hemophilia Alliance joined with NHF and HFA requesting additional information from Ferring Pharmaceuticals and CSL Behring around the recent Stimate recall.

New MASAC Recommendations Focus on Offsite Hemostasis Screening and Treatment

A new MASAC document tackles the challenges associated with using off-site laboratories to conduct hemostasis testing for bleeding disorders such as hemophilia and von Willebrand disease.

Study investigators will be looking at how trial participants may develop antibodies against the AAVs that are a key component to Biomarin's gene therapy.

Recall Notice: Mylan Initiates Voluntary Nationwide Recall of Four Lots of Tranexamic Acid Injection

Tranexamic acid injection is indicated in patients with hemophilia for short term use to reduce or prevent hemorrhage and reduce the need for replacement therapy during and following tooth extraction.

Advisory #428 notes these medications are administered in a hospital setting only by trained healthcare professionals.

The next generation of research starts now

What comes to mind when you think about the future?

NHF Receives Five-Year CDC Grant for Education Programs

The cooperative agreement supports education and awareness programs for bleeding disorders patients, family members, and providers.

FDA Recommends Additional Data for BioMarin’s Investigational Gene Therapy

BioMarin plans to meet with the FDA in the coming weeks to align on the next steps to obtain approval.

Novo Nordisk Announces Near Resumption of Concizumab Trials

Concizumab is an investigational therapy designed to be equally effective in individuals with hemophilia A and B, irrespective of inhibitor status

The recall has been expanded from the pharmacy level to the patient, or consumer level.

Ferring has extended the recall of Stimate to the consumer level.

MASAC Encourages People with Bleeding Disorders to be Included in COVID-19 Vaccine Trials

NHF's Medical and Scientific Advisory Council (MASAC) discussed the role of people with bleeding disorders in SARS-CoV-2 Treatment and Vaccine Trials at NHF's virtual Bleeding Disorders Conference.

New Online Space for Black/African Americans with Bleeding Disorders

The private, online community is for Black and African Americans with bleeding disorders, their family members, and support network.

Stimate Recall Update

CSL Behring and Ferring Pharmaceuticals, Inc have responded to the joint NHF-NHF letter of July 22, 2020, regarding a recent recall of Stimate (desmopressin) nasal spray.

CDC Seeks Perspectives on Living with Chronic Pain

The CDC is looking for 100 participants to discuss using or prescribing different options for pain management.

NHF Increases Financial Support of Chapters

NHF’s new grant program will help chapters during the COVID-19 pandemic.

NHF Opens Nominations for Board of Directors

Board chair Scott Miller calls for more diversity on the board.

Alex Borstein Brings Star Power to Raise Awareness of VWD

NHF and Takeda enlisted the Emmy-award winning actress to feature in a series of PSAs and resources.

A New Path Forward in Research

Leonard Valentino, MD lays groundwork for national research agenda in bleeding disorders.

NHF’s 72nd Virtual Bleeding Disorders Conference: Provider Education for Physicians, Pharmacists, Nurses, Nurse Practitioners, and Social Workers is jointly provided by Postgraduate Institute for Medicine and the National Hemophilia Foundation.

Our distinguished faculty for this year's syposium will be reviewing the treatments currently available to manage bleeding in these patients and share significant advances being made to improve genetic diagnosis, including valuable insights on how to interpret rare platelet gene panels.

A team of researchers from the Royal College of Surgeons in Dublin sought to better understand the effect of congenital bleeding disorder-related restrictions on maternal and neonatal outcomes, including the rate of emergency Cesarean sections.

A team of researchers from the Royal College of Surgeons in Dublin sought to better understand the effect of congenital bleeding disorder-related restrictions on maternal and neonatal outcomes, including the rate of emergency Cesarean sections.

Stimate Recall: NHF and HFA Seek Answers

NHF and HFA have sent a joint letter requesting details on the circumstances surrounding the recall.

CSL Behring and Ferring Pharmaceuticals have announced a recall of lots of Stimate®.

Learn About Public Health and Blood Disorders at NHF's BDC

Two dynamic sessions will addres public health issues facing the wider blood disorders community.

The National Hemophilia Foundation is delighted to announce that it will be hosting a dynamic set of public health sessions as part of the upcoming Virtual Bleeding Disorders Conference (BDC). The product of an exciting collaboration between NHF and several national blood disorder advocacy organizations, these educational sessions will cover several key topics that have far reaching implications for our communities, including emerging, novel therapies, surveillance, and a myriad of public health-related subjects relevant to affected women and girls.


NHF President and CEO Leonard Valentino, MD, discusses the role of von Willebrand factor (VWF) in severe cases of COVID-19.

The safety data presented at ISTH was based on an analysis of 193 study participants with hemophilia A and factor VIII inhibitors.

Spark's investigational hemophilia A gene therapy, administered via a one-time intravenous infusion, is designed to trigger the production of therapeutic levels of factor VIII via the liver cells.

Anger Happens: Coping During COVID-19

Christi Humphrey, LCSW of Hemophilia of Georgia and Jhon Velasco, MA of NHF discuss the principles of anger and how it works in/through the body.

Two Deaths Reported in AAV-Based Gene Therapy Trials for Rare Muscle Disorder

NHF has learned of the recent death of a patient who had been participating in a gene therapy clinical trial for a rare muscle disorder known as X-Linked Myotubular Myopathy.

Pending regulatory clearance, CSL Behring would acquire exclusive global license rights from uniQure to commercialize etranacogene dezaparvovec, otherwise known as AMT-061. 

The factor product donation made by the two companies is in support of the World Federation of Hemophilia's Humanitarian Aid Program.

Healthcare providers who complete the activity will learn about the important role of log-keeping for the home treatment of hemophilia patients and much more.
Pain Management: Coping During COVID-19

This webinar will cover pain in the bleeding disorder community in the context of the COVID pandemic.

These activities are designed for clinical staff including nurses, social workers, physical therapists, pharmacists, and other multidisciplinary providers involved in the management of persons with hemophilia receiving care in the federally recognized U.S. HTC network.

COVID-19 Assistance Programs

Many of the charitable organizations you may be familiar also have COVID-19 specific funds.

The updated trial data from BioMarin have been submitted as a late-breaking abstract to the upcoming World Federation of Hemophilia (WFH) Virtual Summit to be held June 14-19, 2020.

We Stand With You

Discrimination is the greatest threat to a community built on belonging and acceptance. We are committed to being part of the solution.

COVID-19 Webinars and Newsletter Update

NHF will continue to provide information and resources to the bleeding disorder community on the COVID-19 pandemic.

Inhibitors: Coping During COVID-19

In this webinar, Drs. Tammuella Singleton and Tyler Buckner explain what you need to know, and what precautions you need to take if you have hemophilia with an inhibitor.

These continuing education activities are intended for hematologists, pediatricians, and other healthcare professionals who manage patients with hemophilia.

These continuing education activities are intended for hematologists, pediatricians, nurses, nurse practitioners, and other healthcare professionals who treat patients with hemophilia.

Nationwide Children’s Hospital Looks at Optimal Dosing in the Emergency Department

The authors of this paper assert that an updated treatment model is needed globally for people with hemophilia, one that strives for health equity by aligning with the promising treatment landscape of the 21s century.
Nationwide Children’s Hospital Looks at Optimal Dosing in the Emergency Department

A team of physicians and pharmacists analyzed factor dosing of hemophilia patients at the emergency department of Nationwide Children’s Hospital, targeting out-of-range and optimal dosing data and subsequent educational interventions.