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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!

Be sure to check back regularly to get our latest news updates.

This commentary was authored by six individuals with severe hemophilia, all of whom have worked to achieve better health outcomes for patients with bleeding disorders.

Unanswered Questions Remain for Gene Therapy

This commentary was authored by six individuals with severe hemophilia, all of whom have worked to achieve better health outcomes for patients with bleeding disorders.

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.

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.