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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.


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.

COVID-19 WVF

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.

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.

Statement from Novo Nordisk on Rebinyn and COVID-19

BioMarin is working with health authorities and governmental regulatory agencies globally, to ensure the safety of all those involved in their clinical trial program, including enrolled participants, investigators, and staff.

Health and Wellness Update #9 from Dr. Valentino

Information and techniques you and your family can use to stay healthy during the COVID-19 pandemic.

NHF's Board of Directors Meeting

The National Hemophilia Foundation will be holding our quarterly Board of Directors meeting on Thursday, May 28th at 7:00 PM EDT.

Researchers for this observational study focused on macroscopic hematuria, hemophilia, and potential links to family history of hypertension. 

 

Letter to the NHF Community

Many questions and concerns exist in our community and NHF is here to help you navigate the complexities of the pandemic.

Ask the Experts: Coping During COVID-19

This webinar covers updates on how the COVID-19 pandemic is affecting the bleeding disorders community and what people with bleeding disorders need to know about the coronavirus.

BDC 2020 Updates and Transition to Virtual

Important updates regarding NHF's 72nd Bleeding Disorders Conference.

Health and Wellness Update #7 from Dr. Valentino

Information and techniques you and your family can use to stay healthy during the COVID-19 pandemic.

NHF and HFA Hold Safety Summity

The executive summary of the NHF/HFA Safety Summit is available for public commentary.

Playing It Safe: Coping During COVID-19

Many of us are looking for new ways to stay active during the COVID-19 pandemic, but it’s important to find an activity that works for you and your bleeding disorder.

Staying Active: Coping During COVID-19

Experts gathered to discuss strategies to keep physically active and the importance of physical activity for people with bleeding disorders in this town hall webinar.

NHF Advocacy Efforts Related to COVID-19

NHF has been advocating on many issues that affect the bleeding disorders community during the COVID-19 pandemic.

How Your Plasma Could Lead to a Potential Treatment for COVID-19

When you donate your plasma, you become the essential first step in a journey to develop a potential treatment for COVID-19. Learn how from the CoVIg-19 Plasma Alliance.

Health and Wellness Update #6 from Dr. Valentino

Information and techniques you and your family can use to stay healthy during the COVID-19 pandemic.

Voluntary Recall Notice for BD PosiFlush™ SF Saline Flush Syringes

BD is conducting a voluntary medical device recall for multiple lots of the BD PosiFlush SF (Sterile Field) Saline Flush Syringe 10mL.